Monthly Archives: June 2014

5 Minutes With … Daniela Bonanno

Africa travel expert, Daniela Bonanno

Africa travel expert, Daniela Bonanno

When you grow up, you might want to be DANIELA BONANNO.  Originally from Sicily, Daniela moved to New York in her twenties to attend university and start her career until landing everyone’s dream job: Luxury Travel Expert for Absolute Travel.  Part of her work involves regularly experiencing the worlds most sought-after excursions, hotels and adventures.  Daniela radiates excitement and draws the right crowd wherever she goes.  She has discerning tastes and knows how to exceed all expectations.  She resides happily in Cape Town, South Africa with her husband and daughter.

We Are Daytrippers gets to know Daniela:

 

The Daytrippers Team: Who was your role model and or mentor as a child?  

Daniela Bonanno:  My Dad … just by trusting in me and allowing me freedom.

The Daytrippers Team:  Who is currently your role model/mentor?

Daniela Bonanno:  There are a few people who have been inspirational to me lately.  Lewis Pugh is one of them and Tony [Tony Romer-Lee, her husband] is a great mentor to me especially when it comes to my professional life!

The Daytrippers Team: What is your creative talent and how do you cultivate it?

Daniela Bonanno:  I think I’m creative in mastering some pretty incredible journeys for my clients and in the kitchen as well!

The Daytrippers Team: What motivates or inspires you to be creative?

Daniela Bonanno: The world around me.  Cape Town is an incredibly inspirational place from its nature/colors/history.

The Daytrippers Team: Would you share a challenge in your life? 

Daniela Bonanno:  Losing my Mom at a very early age probably defined me as a person without me even realising it until I became a mother.  It has made me an incredibly nurturing and loving but apprehensive mother.

Daniela's parents

Daniela’s parents

The Daytrippers Team:  Would you please share some life advice for any We Are Daytrippers readers?

Daniela Bonanno:  Believe in yourself and your skill.  Whatever they are they can be applied to different situations and can always get you through life in one way or another.  Believe in love and nurture your friendships.  Live your life with passion and don’t be afraid to eat that last piece of chocolate – you probably deserve it!

Stay connected to Daniela:

Absolute Travel – http://absolutetravel.com/expert/daniela-bonanno-expert/

Twitter:  @danib67

 

 

 

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MY STORY: Elliott Preston

New baby, Elliott Preston

New baby, Elliott Preston

Nurse and Mom Melanie Preston from Knoxville, Tennessee delivered ROBERT ELLIOTT PRESTON in her car on the way to hospital on 24th June, 2014 at 6:55 PM EST.  Melanie has agreed to update the We Are Daytrippers media project as a family with new baby Elliott who was born with down syndrome.

“Well this is a story for the blog.  I delivered in the car.”  That’s the message Brook Morrison from The Daytrippers Team read this morning.  Here is the rest of Melanie’s birth story:

I would have never guessed I would have had a TWO hour labor because my other two children were both induced.  Those labors were 8 and 6 hours which is short for an induction … my Mom had me in 3 hours so I should have considered the possibility!  Next time I will remember to head to the hospital ASAP.

In an hour and a half I went from contractions that were eight minutes apart to two minutes and I knew I was between 8-10 centimeters dilated because I remember how incredibly painful it felt when I had my first son, August.  By the time we got in the car I told my husband Bob to call the hospital and tell them I cannot physically walk to the Labor and Delivery department.  They would have to come get me from the Emergency area.  As a nurse, it helps to know the hospital layout and protocol.  However, the answering service was not exactly sure I knew what we were talking about so she transferred Bob to the L&D department and after some negotiation they agreed.  While Bob was on the phone with the nurse my water broke (not something I recommend in the car).

We were nearly halfway to hospital when I told Bob I felt like I had to push.  He said “don’t do that!!!”  Well, tough luck Bob.  Elliott wanted out and I could not bear the intense contractions.  Trying to keep Elliott in was not working out well.  I decided to investigate what was going on.  I saw the baby’s head.  Oh. My.  That’s when I told Bob we were definitely NOT going to make it in time to the hospital and we needed to call back to let them know.  In the middle of our talk I could not help it … a few pushes and I pulled him out!!!  Bob looked over when I was holding Elliott in my hands and got so pale and he kept asking if the baby was breathing.  YES, he was breathing and crying.  HELLO BABY.

Nuts.  When we got to the ER we just started laughing.  I had about 20 people wheeling me back on a stretcher with the placenta still in me and the cord just hanging out.  HA.  I wheeled past about 50 people in the ER like this.  They got an excellent lesson in anatomy and the resident in the room on call in the Emergency Department had obviously never seen this situation he was so shaken he couldn’t ask me questions.

Elliott is doing well on a little oxygen but they have already bumped it down and cardiology is going to run a bunch of tests tomorrow to pinpoint his heart defect.  Hopefully it’s nothing major, but it could be.  Are you ready, Elliot?  Let’s get this party started!

As for the car, we are filing an insurance claim.  It’s a disaster inside.

Elliot in NICU in the hospital.

Elliot in NICU in the hospital.

Stay connected with Melanie and Elliott Preston

@augustinmarch

HAPPY BIRTHDAY ELLIOTT!!!!!

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The Daytrippers Team: “All I had to do was dare to ask”

Charlotte Munn from The Daytrippers Team describes how she discovered Celebrity Ambassador Kurt Yaeger.

Professional BMX rider and actor, Kurt Yaeger.

Professional BMX rider and actor, Kurt Yaeger.

Last year I went to Love Box and saw the very talented London based DNB band; Rudimental. I came back from the festival with one tune in my head; “waiting all night”.

The memory of the festival is resumed in the song for me. I hadn’t seen the video and had no idea what it was about until I sat down one day and watched it.   It revealed the accident and story of Kurt Yaegar, pro BMX rider, actor and now one of Daytrippers’ Celebrity Ambassadors(!!), it highlights how he overcame everything that the doctors told him; how he came about getting back onto BMX after breaking his back, pelvis and losing a leg (imagine!); and more incredible … he still rocked at it!

We tweeted him saying that we thought the video was great and he thanked us. I didn’t think much of it but then my colleagues encouraged me to write to him about Daytrippers to see if he would be interested in meeting us and to discuss a future BMX/Urban project we had in mind. He came to the UK and agreed to come and meet us!

Daytrippers was represented by Marlene (the French bulldog), Leila (Charity trustee) and myself. Kurt came with his British friend James and Huy, both BMX riders.  It was awesome that Kurt took the time to come and see us, he was so genuine and even thanked us for the work we do for disabled children. All I had to do was to dare to ask!  He is a great inspiration for the kids we work with and gives out a very significant message “to never give up on your dreams” even if there are limitations to what you can do physically and mentally you can overcome them through perseverance, compassion and encouragement.

We were so happy that he joined the Daytrippers Ambassadors programme and were thrilled when he told us he would be there for our London Zoo special children’s day weekend in May 2014.  We were ecstatic to see him there representing Daytrippers and he met all the 2014 Young Ambassadors; he even showed Dylan how to pop some wheelie’s in the wheelchair he’s been temporarily using.

Daytrippers Ambassadors Kurt Yaeger and Dylan Wilson

Daytrippers Ambassadors Kurt Yaeger and Dylan Wilson

What still amazes me to this day is how it all evolved from one little tweet into Kurt’s involvement as a role model for Daytrippers Kids.   You never know what can happen if you dare to ask.

 

 

 

Here’s the video that inspired Charlotte:

Stay connected to Kurt Yaeger, Rudimental and Charlotte:

Kurt:  @kurtyaeger

Rudimental: @RudimentalUK

Charlotte: @munnskies

Read more about Kurt’s visit to the Zoo:  http://daytrippers.org.uk/2014/05/20/moustachioed-teenager-who-charmed-us-all-at-london-zoo/

 

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5 Minutes With … Dan van der Kooy

dan JT

Producer and Photographer Dan van der Kooy at Joshua Tree in California.

     Producer with Turner Broadcasting since 2000, DAN VAN DER KOOY talks to We Are Daytrippers about his love of cameras, photography and re-discovering the role his Dutch grandparents played during World War 2. Dan began his career in television interviewing celebrities and rock stars for CNN’s World Beat and Music Room until branching into covering sports for Turner.  He currently lives in Atlanta, Georgia with his yogi wife Leah and their beagle, Lucy.

The Daytrippers Team: Did you have a role model or mentor as a child?

Dan van der Kooy:  As a child I had many role models.  My parents and grandparents all played an important part in shaping the person  I am today.  Looking back now, I can see that they also played an important role in my love of cameras.  Throughout my childhood cameras were not nearly as common as they are today.  Of course there was no such thing as smart phones, “selfies” and “status updates”, but there was always someone there with a camera to document special experiences in my life.  My family knew the importance of taking photographs and video to capture important events and made it so that even today I can look back at photos and remember special times in my life.

The Daytrippers Team: Who is your current role model?

Dan van der Kooy: My current role model is anyone who is older and wiser than I am.  I often learn important real life lessons from their past experiences which I believe helps to make me a better human.  In a time where the term “reality” is thrown around in a very unreal way, and so much of the world is fake and petty, I think it is more important than ever to look to older people as role models and ask them about their past experiences to learn how they got to where they are today.  There is an entire generation of people still on earth today that made it through extremely important events without the use of smart phones, computers or the internet.  I love to meet older people and ask them about their life.  To me there are so many interesting people in the world and all you have to do is stop and take the time to meet them and listen to their stories.

The Daytrippers Team: What is your creative talent and how did you cultivate it?

Dan van der Kooy:  My creative talent is the ability to capture time and tell stories through the use of cameras, editing equipment and writing.  Throughout the last decade I have been documenting the stories of my grandparents’ experiences in Holland throughout World War 2.  I believe in preservation and the importance of passing along these important stories so that they do not get lost among all of the useless information floating around the universe today.

Dan with his dutch grandma who survived WW2 in Holland.

Dan with his grandma.

The Daytrippers Team: What motivates or inspires you to be creative?

Dan van der Kooy: The ability to capture my perspective of a certain moment in time with a camera is what motivates me.  Whether it is in the beautiful, quiet nature of a National Park or in the busiest city street, there is something about having the ability to freeze the moment forever and pass it along to future generations that makes me sleep better at night.

The Daytrippers Team:  Thank you so much for your contribution.

Connect with Dan:

http://500px.com/danvanderkooy

follow him on twitter @danvanderkooy

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MY STORY: Riah Hedger

Future childcare specialist and photographer, Riah Hedger.

Future childcare specialist and photographer, Riah Hedger.

Aspiring photographer and working on her Childcare certification, 17-year old RIAH HEDGER lets us into her life for a moment as we ask her a few questions about what it’s like to live with ADHD and the mentors in her life.  Riah was one of Daytrippers Young Ambassadors for 2013 and we recently saw her at the London Zoo where she won our guess the sweets competition.

Here is Riah’s story:

The Daytrippers Team:  Tell us about , when you were diagnosed and how that made you feel?

Riah Hedger: I was diagnosed with ADHD at the age of 6; I was diagnosed at such a young age so really I had no way of understanding how I was feeling at that age. I do know that I was treated differently because of it during my time at school and that did make me feel isolated as people were treating me differently due to something that I couldn’t help. ADHD is my best friend at the best of times; it also is my enemy from time to time and as the saying goes, keep your friends close and your enemies closer! I have also traits of Autism, this is a co-existent disorder that affects me too.

Riah's prize for winning the Daytrippers competition at London Zoo 2014

Riah’s prize for winning the Daytrippers competition at London Zoo 2014

The Daytrippers Team:  Tell us about your mentor and role model as a child?

Riah Hedger:  I have had my Dad stick by my side, he’s shown me the right things to do when I was younger, he always helped me with problems that I had in School and he would help me deal with the problem as best as he could, I do often think of a life without my Dad and personally that life really sucks!

The Daytrippers Team:  We know you have finished a photography course and will take the second one soon; what motivates you to be creative?

Riah Hedger:  Actually I’ve just come to the end of my Childcare level 1 which has been tough, I have had a real tough time getting through the last 5 years at School and I was like “I want to right the world and it’s view on kids with ADHD and associated conditions but the course only covered a small % of this.  I’ve learnt a lot of things, what motivated me to do photography as it was a big interest of mine, it was also very relaxing and I loved taking photos of people when I went to gigs. I also enjoy photography as it means I’m behind the camera, I struggle with social communication and interaction so this suits me just fine and I’m uploading some of my fave pictures for Daytrippers soon, so watch this space!

The Daytrippers Team: Would you share a challenge in your life?

Riah Hedger:  A big challenge in my life actually is College. I am slowly overcoming it but it is still quite a big challenge for me, I’m constantly paranoid at the fact that people are saying something about me, that I still don’t fit in with everyone even though I am almost finishing my level 1 course.  I have overcome that by having people who have stuck by me during my year at college and I have also had my Dad to help me, I do mention my Dad a lot, it’s been a pure 1 2 1 relationship for us for many years and this suits me and my ADHD just fine.

The Daytrippers Team:  Do you have any advice or information you would like to share with children or families who may be facing difficulties?

Riah Hedger:  Yeah, forward all questions to my Dad, he’s brillo at answering my many questions on life and ADHD! Seriously though stick by your family, listen and act on advice, think before you act and never be frightened to say “I’m sorry, I didn’t understand that!”

The Daytrippers Team:  That you so much, Riah!  And you’re right – your father’s advice was fantastic.  Read it here: https://wearedaytrippers.wordpress.com/2014/06/16/my-story-russell-hedger/

Any questions for Riah?  e-mail enquiries@daytrippers.org.uk and we can forward them on to her.  Look out for some of her photographs to debut soon as well!

Riah and her father Russell at Daytrippers Creative:Space event in 2013

Riah and her father Russell at Daytrippers Creative:Space event in 2013

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MY STORY: Russell Hedger

Russell Hedger, coach for ADD-vance

Russell Hedger, coach for ADD-vance

Father, former DJ and coach for ADD-vance in Hertfordshire, England; RUSSELL HEDGER shares experiences and wisdom with We Are Daytrippers about raising his daughter Riah who is on the autism spectrum and has ADHD. Russell and Riah have been quite the dynamic duo at Daytrippers events and Riah was one of our 2013 Young Ambassadors.

The Daytrippers Team:  When did you find out about Riah’s diagnosis and what were the feelings surrounding it?

Russell Hedger:   Riah was an active baby and toddler, she has another Brother and Sister who displayed similar behaviours and the first initial feelings from the pediatrician was that it was mimicry behaviour as she was around her Brother and Sister a lot, I told them that I knew my child better than anyone and there were definite similarities. Riah had difficulties in her first school; she found the whole aspect of social interaction, social communication and flexibility of thought challenging.  These I know now as the triad of impairment and is associated with the spectrum. She was often taken out of classrooms and there were many meetings had regarding her behaviour.  The cold words of that Head teacher still ring loud in her head to this day, “You will never amount to nothing Riah!”, I had had enough at that time and moved schools and areas to where we have been for the past 11 years. Riah was diagnosed with ADHD at the age of 6 and was immediately put on medication.  I feel that I have had no other choice but to manage her ADHD/Autism on my own as I found input from professionals very unhelpful.

Russell and Riah at a Daytrippers bowling party.

Russell and Riah at a Daytrippers bowling party.

The Daytrippers Team:  Tell us about your coaching service available in Hertfordshire.

Russell Hedger:  I have been around additional needs now for more than 30 years.  I feel it’s my life experience and wasn’t until 2006 when I spoke to Anne Ross from ADD-vance that she totally changed my perspective on changing that perspective into helping others.  Anne put me on a training course and invited me to management meetings and facilitation meetings with ADD-vance.  I started coaching in 2007 and have been doing Voluntary work since.  I have a knack of getting 100% out of all that I come into contact with because I treat others as I wish to be treated myself. Sadly ADD-vance is only Hertfordshire exclusive and is a wonderful Charity blessed with many people all with their own stories and experiences, their knowledge is enormous and have played a very important part in my CPD.

I have worked with many families all over Hertfordshire and enjoy the very challenging behaviour that comes with ADHD, Autism, Aspergers and other associated conditions.  I’m always humbled by others and often come away feeling that my situation is belittled by what some families are dealing with on a daily basis; such strength and determination and I always make it a habit to keep in contact with people and still help and give advice a long time after we have finished.  The referrals come in from many different agencies and funding streams and I hope that one day I can make a successful business out of it, the website is www.add-vance.org if you’re curious about finding out what we do.

The Daytrippers Team: Did you have a role model or mentor as a child?  How about as an adult?

Russell Hedger:  Yes, as a child it was my Mother and Father.  They were my strength and I totally feel that I’m very much who I am today because of how they raised me.  They took the time to instill (core beliefs) many ways of respect and rules and regulations.  My Mother was a strict South African lady and my Father was from a line of Navy and Army background.  I have only kept in contact with a few of my friends from my younger days (God bless Facebook and Friends Reunited!) and as an adult it has been Loretta Borg (CEO Volunteer Centre Broxbourne & East Herts) and Anne Ross (CEO ADD-vance); these two ladies have developed my CPD and skills to help me through my dark times and have been alongside me since 2005.

It’s hard to put down a list of who I admire. I have and will always draw inspiration as well as lessons learnt from many different people and scenarios, I have done 000’s of hours in furthering my CPD (continuing professional development) around many different subjects.  I enjoy conversing with people from different backgrounds and have true love and admiration for many people who are living with their problems and getting out and making that difference, however small.  Admiration for me is a daily thing and I’m blessed to be around such wonderful people. Of course it would be very rude of me not to list Daytrippers down here as well; what you guys are doing collectively for others out there is so overwhelming for me (feminine side coming out now and tissues please lol!) I have huge respects for Daytrippers and have been so proud to be with you as well.

The Daytrippers Team: Would you share a challenge in your life?  How did you overcome it and what did you learn?

Russell Hedger:  Absolutely, quite simply that I have been a single Father now for the past 13 years. I have raised my 3 and are helping to further my 6 Grandchildren.  Who knows one day I would love to be a Great Grandfather. I have others out there that want me as a Father and I have adopted (not officially) 2 beautiful girls.  My arms are big and accommodate who I can. I had no prior knowledge of single Fatherhood.  Everything before that was done on a joint basis with someone else and I had to tackle many challenges.  Getting recognition and help was a huge milestone and understanding there was no one around at 2:00 am to help really sucked. I’ve done the whole caboodle from menstruation to childbirth to adolescence to adulthood trust me my tool kit is immense.

I have learnt that I can depend on others and to relax every now and then and to share experiences and value and admire others perspectives.  I’m still learning on a daily basis, a lot of conditions are evolutionary and manifest in a different developmental path to those of our neuro typical counterparts. One thing for sure, I’m happy and ready to see the next 40 odd years in as well.

The Daytrippers Team: Do you have a creative talent?  If so, what motivates or inspires your creativity?

I think regularly outside the box and try to put myself in the other person’s situation and always think of what I could do differently or what it must be like to have what you have.  I never quote that I understand or I know how you feel because I’m not you. I have shown Riah and my other kids the basic life skills needed to function and still help them out on a very regular basis. I have a huge passion for breakbeats and samples and rare groove is my chosen musical genre. I was a DJ for a good few years back in the day and used to be part of a crew that used to mix and scratch mix.  Now a days I’m happy to have a huge catalogue of stuff  on my hard drive.  I’ve tried CD mixing and mixing using software but it doesn’t feel or sound the same since the days of vinyl.  My motivation now comes from my children and Grandchildren, they are my drive.  Inspiration comes and hits you from many different angles and watching Riah overcome many different scenarios (and still intact at the other end) is a huge motivational and inspirational tool, I have met many different people in my years, I always listen out for their tales of inspiration.

The Daytrippers Team: Do you have any advice or information you would like to share to the those who may be facing difficulties?

Russell Hedger:  This is hard…. I find things like this difficult because I don’t know your families or children. I’d love to share with you to have hope and belief, remember the good times you had as well as learn from the bad times, connect with external family and make it a part of your life to get them actively involved, learn to follow-up and get an understanding for yourself of any organisation or technique you have been shown, laugh and cry regularly, develop a grab sheet so others can learn about the key facts about your child, learn about your child’s condition and then think how would it feel if you had it and then try to think how it feels for your child.  One thing we take for granted is that our kids didn’t ask for their condition, they were given it.  Minutes are worth more than money, spend them wisely, you never really understand a person until you consider things from his point of view until you climb into his skin and walk around in it, it’s better to follow your own life’s mission however imperfectly than to assume the life mission of another person however successfully, nobody can make you feel inferior without your consent.  To a child ….love is spelt T.I.M.E.  Treasure your relationships, not your possessions.  To handle yourself, use your head; to handle others, use your heart. Don’t set compensation as a goal, find work you like and the compensation will follow; I’ve never known anyone who on their deathbed said I wish I had spent more time at the office. Money never made a person happy yet, nor will it, there is nothing in its nature to produce happiness, the more a person has, the more they want, instead of filling a vacuum, it makes one.  Time and health are two precious assets that we don’t recognize and appreciate until they have been depleted, oh and my last one for you: genius is 1% inspiration and 99% perspiration!

The Daytrippers Team:  Thank you so much, Russell.

Stay in touch with Russell Hedger,  www.add-vance.org ADD-vance Voluntary behavioural coaching services, Voluntary Treasury & Finance Volunteer Centre Broxbourne & East Herts

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5 Minutes With … Coldplay’s Will Champion

English musician, Will Champion

Will Champion, English musician

We Are Daytrippers proudly features the Rock Star drummer and dad, Will Champion. The 5 Minutes With section is about highlighting proper role models, mentors and creatives. We believe Will fits each category. He happens to also be a neighbour of Brook Morrison from the Daytrippers Team. The last time Brook had a brief conversation with Will, she was at a party hosted by Superman Brian Eno. Will was telling her about the types of people who pop into Brian’s regularly organised singing group (to which his lovely wife belongs): “Yeah, you never know who will show up. Paul McCartney was there once.” Brook thought it was humble and cool of him to be part of this incredibly well-known band, yet still show enthusiasm about other rock stars and seem so human. This year Brian and Will worked together on an album with Karl Hyde called Someday World, and he spent the summer on the world tour with Coldplay. Sure, he is a busy and talented musician, but we get the sense his real love is time spent with family.

The Daytrippers Team:  Who was your role model as a child?

Will Champion:  My role model as a child was probably my Dad.  An obvious choice but together with my Mum they made me feel as though anything I wished to know, they could help me to find out. We were surrounded by books and music in our house and it was a fantastic environment to grow up in.

The Daytrippers Team:  Do you have a role model or mentor today?

Will Champion:  We have been so lucky to work with some of our heroes and people from whom we have so much to learn.  Working with Brian Eno was a fantastic experience as he has produced some of the most wonderful music in my lifetime.  As a mentor, he inspired us to not be afraid of experimenting and expressing ourselves in new and unexpected ways.

The Daytrippers Team:  What is your creative talent and how do you cultivate it?

Will Champion:  I play music for a living which for me is a dream come true.  I grew up playing instruments in a house filled with music.  I was lucky enough to meet a group of like-minded people at university and have not done anything else since!

The Daytrippers Team: Do you have any experience working with disabled people?

Will Champion:  I have seen the benefits that music and creativity can have on everyone, not least those with disabilities.  It is an outlet that everyone can use, you don’t need training or proficiency for it to be fun and ultimately, music brings people together.

The Daytrippers Team: What motivates or inspires you to be creative?

Will Champion:  Working in music allows me to say and do things that wouldn’t be able to do in any other way.  It helped me find a ‘voice’ through which I could understand and communicate things and now it allows me to help other people, make people happy (or sad!!) and to create something that will be around long after I have gone.  I owe my whole life to music.

The Daytrippers Team:  Thank you so much Will.

Stay updated:

http://www.coldplay.com

http://www.enohyde.com

Oh yeah, and check this out:  He sings too – we found this footage:

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5 Minutes With … Sara Johnson Jackson

Sara Johnson, Keshet Head of Scripted Co-Productions and media representative for Ch18 Europe

Sara Johnson, Keshet Head of Scripted Co-Productions and media representative for Ch18 Europe

Maybe it was fate Daytrippers has shared an office with Keshet International for 18 months or perhaps it was our initial admiration for the HBO show Homeland and countless other successful productions from Keshet.  Whatever the reason, we naturally became friendly with its Executive Producer and Head of Co-Productions, Sara Johnson Jackson.  She’s an inspiration to watch in action and always knows what to say while staying genuine, clever and authentic.  She is someone you want to know.  We were thrilled when she and her two sons came to Daytrippers 10th Birthday party in 2013.  Sara is full of experience and wisdom.  Do read on to feel inspired and get to know her:

 

5 Minutes with Sara Johnson Jackson

 

The Daytrippers Team:  Who was your role model or mentor as a child and how did they influence your life? 

Sara JJ:  So many people are in my head and heart as I try to live well but my Mum has been a big influence.  She worked in TV up to having my brother, sister and me and then after we had all gone to senior school.  Alongside the glamour of BBC Manchester, what I realise she also gave to me was her commitment to volunteering and doing for others.  As far back as I can remember she has been part of the League of Jewish Women and across the years has volunteered with them throughout the north Manchester community.  She has just become the NW regional chair and still does hand massage and Head Start at Christie’s cancer hospital.  She used to visit and help with physio for one lovely boy with cerebral palsy and take me along in the holidays which I loved.  I often went with her to sing in old age homes and hospitals and it was just part of what we did.  When I look back now, as a Mum who works in TV, still sings a bit and spends my spare time helping to run our Chromosome 18 Europe Charity and work on behalf of GDUK, I see that someone wonderful showed me how to face outwards as well as in.

The Daytrippers Team:  Who is currently your role model/mentor?

Sara JJ:  At work I have a lovely network of people that I add to with each new job.  As a mum my sister is someone who I get so much advice and wisdom from. And in charity I am awed by the other members of our amazing Ch18 Europe committee, all parents of complicated children, and Janine Cody, the mum who started it all 20 years ago by going back to finish her genetics studies and set up the Ch18 clinical study to teach her about her own baby who nobody could explain.

The Daytrippers Team: What is your creative talent and how do you cultivate it?

Sara JJ:  I love to write, and through my writing express how I feel through emotions both happy and sad.  I blog at sarajinbetween.blogspot.com, write kids books, I do articles when I can and I feel stodgy when I haven’t expressed myself for a while, even a scribble in a notebook will do.  I also love to run storytelling sessions for kids at school in my spare time.

The Daytrippers Team:  Have you had any experience with disabled people?

Sara JJ: I have a natural affinity and comfort with disabled people because of my Mum’s volunteering.  A lot of the people affected by Ch18 have moderate to severe disabilities and I enjoy reading about them through their parents and meeting them at conference every other year.  And my own son has 18p deletion and 22q duplication, both rare genetic disorders and registered disabilities.  He is very physically and developmentally fortunate but I have my own views (and some old blogs) on invisible disabilities and how it isn’t always easy to look like everyone else.

The Daytrippers Team:  What motivates or inspires you to be creative?

Sara JJ:  I know it’s something that makes people smile and helps me to be a nicer person.  I love to make cards and draw on brown paper instead of buying normal wrapping for presents, I like to face paint my kids when they let me and any opportunity to draw with them I do.  I am part altruistic in my creative output, but mainly it helps me feel good and zone out from my often too busy life.

Sara with her two lovely sons and dog by the seaside.

Sara with her two lovely sons and dog by the seaside.

The Daytrippers Team:  Would you share a challenge in your life?  How did it affect your life?

Sara JJ: The biggest challenge I had was the first 4 years of my little boy’s life, when I knew he was so poorly because something wasn’t right.  When I finally shouted loud enough and found a doctor who listened, we discovered his 18p deletion but they still couldn’t tell me anything about it.  I felt lonely and inadequate, but thankfully through the Chromosome 18 Registry I learnt about him and took all the advice I could get to give him the best start I could.  7 years on and I help other people like me so they never feel like I did, but I still haven’t met a doctor who has heard of this condition or met a child with it.  So my life, our lives, that of my husband, our wonderful eldest son, our parents and siblings and cousins, they are all affected but only positively by our miracle boy.  For me in my head it is never as simple as it is for them as they look at this typical-seeming smiling boy, and perhaps don’t quite know all it took and still does to keep things ticking along.  But I know that this is why I was put here.  To be mother to my boys and whatever else comes from that.

The Daytrippers Team:  Open information or advice about anything.

Sara JJ:  I work with Jeans For Genes who try to reach out to parents in need.  It is so easy to plough on, through any challenges, thinking that nobody understands or can help.  And it’s true we none of us walk in each other’s shoes, but we can try to help even so and parents with challenges in their home have a shorthand no matter how different the challenge.  The internet is an amazing thing, it lets you peek out and see if anyone is there to help, and slowly allows you to reveal your vulnerabilities by typing, asking, through chat rooms or internet groups of like minded people.  Learn to find safe places to do that and speak, write, cry, yell, smile, hug and be part of the people around you.  Loneliness is what we have to try to avoid, certainly what I try to remind myself is something I want to keep moving forwards from.

Connect with Sara:

sarajinbetween.blogspot.com

@MrsSaraJJ

@Chromo18

Learn more about Chromosome 18: http://www.chromosome18.org

 

 

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MY STORY: Melanie Preston

Melanie and Bob Preston

Melanie and Bob Preston

Nurse and Mom MELANIE PRESTON from Knoxville, Tennessee is pregnant with her 3rd child who will be born with down syndrome in June 2014.  She has agreed to update the We Are Daytrippers blog throughout her experience leading up to the birth of her son Elliott and their experiences as a family.

Here is Melanie’s story:

Many people whom I have met or read their stories of their prenatal diagnosis of Down Syndrome remember the exact date they were delivered the news.  I can honestly say I have no idea.  Not because it was a terrible moment that I suppressed in order to forget the shock but perhaps it is because I already knew.

My husband and I met in 2010 through online dating, that’s right online – who knew it worked!  We were married in November 2011 and our first daughter arrived in January 2013.  I also have a 13 year old son from a previous relationship who is a great help and a better big brother than I could have ever imagined.

Knowing we wanted to have more children and have them close together because we are in our late 30’s was why we decided to start trying right away after the birth of our daughter.  On our second year wedding anniversary I took a pregnancy test that was immediately positive.  A range of emotions followed when I realised I would have two children 18 months apart and an active teenager!  Busy would be how our lives would be summed up for the next few years but over time it would pass and be worth it.

From the beginning of this pregnancy I felt like something was “different.”  I didn’t feel right.  Not exactly sick all the time but extreme fatigue and just something I couldn’t put my finger on.  My doctor asked that we return a week later as the heart rate was too low during the first check up.  Everything looked fine on ultrasound so we scheduled in a nuchal scan.  The test came and went with no indication on ultrasound that anything would be amiss but when the blood work came back I received a call that my risk was elevated to a 1 in 44 chance of down syndrome and I was referred to a high risk obstetrician at that point.  Several days later I went to the consult and had more blood drawn for the fetal DNA testing and we also learned we were having a BOY.  That was amazing news because my husband was beaming at the news.  The wait for the test results to come back was over a week and people kept reassuring me that it was very unlikely that the tests would show a positive for down syndrome.  In fact, according to the screening, they were correct – there was only a 2% chance.

We did a genetic test to be sure and when the counselor called to let me know our chance had increased to 99.8 % of down syndrome I wasn’t surprised or shocked and I didn’t shed a tear until I thought about having to call my husband and tell him that the son he was excited for wasn’t going to be what he had always pictured.

We chose to have an amnio several weeks later not to confirm the diagnosis but to figure out which type of down syndrome he had and it turns out it is the completely random non-disjunction type (which will not raise my odds in future pregnancies as we would like another child).

Dreams change; ours did in an instant but what I have learned is they can be replaced by a new dream.  A dream of hope and limitless potential.  We never questioned whether to continue with the pregnancy as we knew we could love him regardless of his differences.  I started researching everything I could find about down syndrome and joining various online blogs and forums to get the latest information.  Many things seem to have changed in the special needs community in recent years.  There are so many advocates for these children and resources.  The outcomes have improved and who knows where we will be in 20 more years.

We already named our son.  He will be called Elliott because I have always loved the name.  The associated medical problems that can occur and many that will remain unknown until he is born completely freak me out.  I have to be honest, I’m scared of the unknowns.  It really isn’t the extra chromosome that worries me but the underlying health issues are daunting if you actually start to look at the “what ifs.”  So for now I have stopped googling medical issues and down syndrome in the same search as it’s better for my health and blood pressure.  Currently I’m 35 weeks with an induction scheduled for 37 weeks so not too much longer until we meet Elliott and his extra chromosome.  Stay tuned in the next few weeks as I’m sure this is going to be a wild ride.  I can’t wait to introduce you to my youngest son.

Written by Melanie Preston

follow Melanie on Twitter at @augustinmarch

 

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5 Minutes With … Shaun Buswell

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English musician Shaun Buswell at the 121212 Challenge

Daytrippers Children’s Charity worked with Shaun Buswell on a very special project.  He created an orchestra made up of musicians he met as strangers while traveling on the London Underground and then put on a fundraising event for our charity performing with the orchestra at the O2 Shepherds Bush Empire in January 2013 called the 121212 Challenge.  Shaun Buswell and his lovely girlfriend Gina were a powerhouse who worked together to make sure that this challenge was a success.  And a success it absolutely was.  Shaun’s philanthropy (this was not his first challenge) and musical skills coupled with his vision of doing good while pushing himself to the limit is inspiring.  We learn more about Shaun, Lutz Long and coffee cups in our 5 Minutes With section:

 

5 Minutes With Shaun Buswell:

The Daytrippers Team: Did you have a role model or mentor as a child?

Shaun Buswell:  I think we generally have a lot of role models in our lives growing up, but often don’t consider them as such until much later on. For me, the person who springs to mind first is my grandad, Sidney. He died when I was 8 but his influence on my life still resonates today. He was the first person who taught me to draw and to look at things differently. My earliest memory was when he showed me a coffee cup. He said “see, when you look at it from the top it’s a circle. But when you draw it, the circle is squashed into an ellipse. It’s a different shape but still the same thing”. As a toddler it blew my mind and it made me realise that we can view things more than one way.

The Daytrippers Team:  Who is currently your role model or mentor?

Shaun Buswell:  There are people in history I still consider role models. Lutz Long, the athlete from the 1936 Olympics is someone I admire greatly, for being someone who showed great compassion and sportsmanship in the face of fascist oppression. As for mentors, I’ll always continue to look to my mother and brother for guidance and, of course, my lovely girlfriend, Gina, who gets the brunt of my frustrations but keeps my feet on the ground while letting my head float in the clouds. Mentors are often closer than we realise, and I think we should never underestimate the effect our friends have on us. Finding good friends who you can honest with is a valuable thing in life.

The Daytrippers Team:  What is your creative talent and how did you cultivate it?

Shaun Buswell:  I think most people say my music making is the main creative talent, and the things I do with my challenges. I never had any specific music lessons growing up, but was given a guitar by my uncle when I was about 16, and decided just to sit and learn by myself. I wanted to do things my way, in a way that made me happy, and not follow the standard way of doing things. And yet, I’ve proven that if you apply yourself, with just an idea, you can make anything happen. I find the sentence “that’s just the way things are done” is one of the most destructive things to creativity. That’s why I’m always so pleased to see people walk their own paths and have a lot of respect for someone who does their own thing, even when it’s the hardest thing to do.

The Daytrippers Team:  Have you had any experiences with disabled people?

Shaun Buswell: I’ve done some work with Music Alive, which who initiate and develop creative music making with disabled and non-disabled people. It’s one of my most enjoyable times playing with these guys and seeing how they work. They have a lot of cool, fun instruments. The biggest eye opener was working with people with severe physical disabilities and taking the time to understand what they say, to realise that it has no effect on their mental capacities. I was talking with one of the guys who was severely disabled, but given an instrument that would enable him to use his body movements to create sounds. We were making some folk music, playing guitars and tambourines and chimes, and when I got to understand him, he turned to me and said “I actually don’t like folk music much. I’m really into hip-hop”. It was one of the funniest things, and it made me appreciate how taking time with anyone can really make a different to both them and you.

The Daytrippers Team: Is there anything you might feel like sharing?

Shaun Buswell:  It’s always a danger when I’m asked to share anything with myself, but I don’t have much of a filter. I’ll say anything anytime if I think it’s respectful, and I guess sometimes that gets me into trouble. I think we have a tendency to often over-sensitise things and worry about saying the wrong thing, instead of spending more time worrying about doing the right things.

I believe we’re currently in a society where we see pop stars on TV and think being like that will make us happy, yet as a society we don’t think a song is as important as a loaf of bread. Because of this, it’s really hard for creative people to feel at ease in this world sometimes. But I honestly believe that if you do what you love, then everything else will come in time.

The Daytrippers Team:   What motivates or inspires you to be creative?

Shaun Buswell:  This is a question I often think about and I honestly don’t know the answer. I can be moved by anything, from severe human rights violations by companies like Coca-Cola & Nestle, to a man whistling on the street. I guess I think that you creativity isn’t a switch you turn off and on, I think it’s always there, and if you’re living and breathing then anything that happens in life can inspire or motivate you.

The Daytrippers Team:  Thank you for your time and contribution, Shaun.

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Shaun Buswell, musician and philanthropist

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121212 Underground Orchestra Challenge

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