Photo montage of happy people

Our Families

Team Tommy
Fundraising Target:
$ 10,000.00
Donations to Date:
$ 10,050.00

Messages of Support

“I hope this money can help to put a smile on Tom's face. Love to you all. Pete, Amanda, Ruby & Zoe.”
-- Amanda Keyes

“Go Tommy! We love you. Aunty Ali, Uncle Steve, Lachie & Alex xox”
-- alison inwood

“Go Team Waddell !! You are doing an amazing job. Lots of love The Hubczenkos (and big kisses from Lucy) xx”
-- Peter Hubczenko

“It is a small donation for Tommy, but I know how every little bit helps. I hope that you reach your goal soon and that Tommy receives all the care and treatment that he deserves.”
-- Jennifer McCormack

“Sending loads of love, hugs and best wishes. Love Tamara & Bennies”
-- Tamara Parker

“Thank you for continuing to prove doctors wrong and for your love and inspiration. Love Lynda and Kenzie Sharpe xox”
-- Lynda Sharpe

“Go Team Tommy!!! You are always in our prayers and thoughts. Love you lots xxx The Wojji's xx”
-- MARIA WOJCIECHOWSKI

“Tommy, you are an amazing inspiration! You and your beautiful family are in my prayers and thoughts constantly! Stay strong, Tommy! Love Jen, Darran, Cady, Jesse, Scarlett & Kyla Shannon (Cairns) xoxoxoxox”
-- Jennifer Shannon

“Hey Wadsy All the best with your fundraising efforts for the bravest little boy.. He is a true champion... Tons of Love and best wishes to you all... Natty xx”
-- Natalie Grey

“I feel so honoured to be able to help support your gorgeous little boy Tommy on his journey to good health and a happy and fulfilling life. He is the cutest little thing. I admire you and your family and your strength and determination. Take care. From Nicole Holleran. xx”
-- Nicole Holleran

“Hey Nat, My thoughts of love and support are with you even from far away France. You are doing an amazing and inspiring job as a Mum and as a woman. I hope everyone who sees this page digs deep. Love from Victoria (Sharpe), Michael, Louis-Gabriel and Alasdair Walker”
-- Victoria Walker

“I know Maria Wojciechowski a friend of Paulines and your story touched my heart and I hope that Tommy can lead a fulfilling life. I know its not much compared to what you need but please accept my prayers for you and your family.”
-- Brea Daley

“Sorry that its only a small donations but i hope it makes a big difference and my thoughts and prayers are with you for happiness and recovery. be strong my lil friend ”
-- Oscar Grey

“See you at the walk, Tommy ! ”
-- Andrew Schroder

“Love ya Tom! From your friend Andrew. xx”
-- DARREN SCHULZ & LEESA NEWCOMB

“Hello Tommy, you don't know me but I heard your story from my daughter Jennifer Shannon who is a friend of your mummy. Stay strong little boy. I will keep you in my prayers. Helen Martin”
-- Helen Martin

“Tommy you have proved that you have the courage and detemination to overcome your difficulties. Lov you Gran and Grandad”
-- Andrew Waddell

“Tommy this is for your oximeter and your mum's peace of mind. Love from your MC Aunties xx”
-- Amanda Kennedy

“We love to support our friends friends. Good luck for the future.”
-- Kerry Estella

“I am in Bris that week, will try and come and support you. Think of you often!!”
-- Kerry Dann

“Hi Natalie and Gordie- Chantal passed on this information ; and of course we are very happy to assist. I have followed Tommy's progress through Chantal from time to time and I know he is blessed to have you guys as his family and vice versa . I do hope and pray you are successful in reaching your goals, Lyn”
-- Lynette howells

“Dear Waddell Family - Karen Flecknoe told me Tommy story from when he was born. Your story broke my heart and I have so much admiration for your strength and courage. Best wishes for the fund raiser - I sincerely hope you reach your target.”
-- Nicole McConville

“Wow! I admire such strength in such a little person to be so determined and sincerely wish him all the very best.I also admire the resilence, strength and such wonderful support the Waddell family clearly gives, their beautiful son, I hope your fundraising efforts are a huge success. ”
-- Sacha Nielsen

“Go Tommy”
-- John Meehan

“Dear Tommy We are thinking of you. Anna & Nigel Markey & kids (friends of your aunties)”
-- Anna Markey

“Woooo - woooo for the Tommy Train! love Finn, Hayles and Matt”
-- Matt, Hayley & Finn Vandermeer

“"Go Tommy" "Go Natalie and Gordon too - you are legends"”
-- Anthony Nicholls

“Such strength shown by a little boy - keep it up. Andrew Hemming”
-- Andrew Hemming

“Tom, you are our courageous and loving little boy and I am so proud to be your Grandad!! Love GRANDAD AND MAUREEN X”
-- Pat & Vic Mednis

“Best of Luck Tommy,you are an inspiration to all of us.I wish you every success in achiving your goals.Love to you all. "GO TOMMY GO"”
-- Pat & Vic Mednis

“Go team Tommy! Wish we we could be in Brissy on the 12th to walk alongside you.”
-- James and Ainsley Bridges

“Hello Tommy,Nat,Gordon and Harry. What a beautiful idea this is, i only wish we lived closer and could help you guys out more and also join in on your walk. We think of you all often, and Tommy - you are such an inspiration to us all, if only everyone had your spirit. Cant wait to meet you soon. Nat,Gordon and Harry - you are doing such a wonderful job for your son and little brother, you must be so proud!! Miss you guys Lotsa love Tracey, Damon, Sienna and Cameron xxxx”
-- Tracey Storey

“Go Tommy Go! Love and hugs, Pat and Vic”
-- Pat & Vic Mednis

“As a very new mum I can not begin to understand the challenges you must face on a daily basis. I am inspired by your little man's courage! Best wishes x ”
-- Rosemary Williamson

“Have a wonderful walk and I hope that you raise lots of much needed funds.”
-- Sally harbison

“Go Team Tommy!!! Much love, hugs and kisses to all the Waddells. Hope to see you and meet the little champion on my next trip home!! Hayley xx”
-- Hayley Lyons

“go Team Tommy! youre in my prayers :)”
-- adsa hermawan

“Hi Tommy, We have heard so much about you from your loving aunty Alison and wanted to wish you and your mum and dad all the very best with your fundraising efforts.We look forward to meeting you one day. Martin,Leisa,Ben and Mia Hastings”
-- Leisa Hastings

“What a great cause!”
-- Troy Rafton

“We love Tommy, Nat and the whole Waddell family. We will be there for them always.”
-- Rob Martin

“"Go Team Tommy" You inspire us and we can't wait to support you at Riverwalk. Love Aunty Pauline, Uncle Damian, Kate and Sophie.X ”
-- Pauline Mednis

“All the best for the 12th - we think of you guys often and wish we were in Brisbane to provide some extra support for the inspirational Waddell family. Love the Collyer Clan - Noel, Beck, Zara, Lucas and Maggie xx”
-- Noel Collyer

“Hope this helps in some way. ”
-- Angelee Samin

“Go "Team Tommy!" with best wishes from the Hogan family.”
-- Keryn Hogan

“Always thinkinh about you guys and tear them miles up Team Tommy "Tuff Nut" Lots of Love Always Jacko, Nicky, Lydia & Billy”
-- Simon Jackson

“I was sent the link of Tommy's story by a friend and remembered Thomas from his time at the Mater Children's as I work there. Wishing you all the best. Keep smiling!!”
-- Anne-Marie Timm

“Hello Tommy, my boys Matt, Kees and Luke will be there on Sunday to see you. Darren & Louisa Rogers”
-- Darren Rogers

Team Tommy

Sponsored By

Description

All aboard the Tommy Train

My name is Tommy and I have 1P36 Deletion Syndrome. My Mummy & Daddy say I am courageous and stubborn, cheeky and funny. I really want to show people who I am and participate in life just like you – but I need some extra help to do this. This is my story told by my Mummy and Daddy and my brother Harry.

On 22 April 2009, we welcomed our fragile yet determined little boy Tommy into the world. At 3 weeks of age, Tommy stopped breathing at home and turned blue very quickly. My husband resuscitated him with the help of the ambulance over the phone. Thomas went on to spend months in ICU and the Mater hospital. We almost lost Tommy again due to life threatening seizures. We baptised our baby in intensive care and we were told he would probably not make it.

Tommy turned 1 in April and has continued to amaze everyone and fill our hearts with his smiles, determination and purity every day. His neurologist says he is evolving – meaning his brain is developing all the time which is so wonderful because who knows how far Tommy could go with the right therapy and early intervention.

Tommy has 1P36 Deletion Syndrome which means he is missing a very tiny part of Chromosome 1. There is no known reason why this happened to Tommy – except that it’s a small spelling mistake in Tommy’s genetics which results in specific symptoms and major challenges.

As a result of this syndrome, Tommy suffers hypotonia (floppiness or very low muscle tone), seizures, hearing loss, vision delays, difficulties with communication (absent speech) and inability to feed orally (Tommy is fed via a tummy button), very weak lungs and respiratory system (no longer oxygen dependent after 12 months!), debilitating painful reflux, developmental delay and other health issues.

On the bright side, Tommy is brave and has a strong will. He yells at the doctors, nurses & us when he doesn’t like something! He smiles and giggles now when he is happy and playing. He verbalises his feelings so well for a child with limited communication options. He knows we are his family and he knows we love him. He loves water, music, swings and the outdoors.

There are many children and adults in the world with 1P36 Deletion Syndrome (while it was only formally founded in the 1990’s) so we are able to reach out to these families and learn as much as possible about how to help Tommy meet his potential milestones. We know Tommy needs the following:

• Lots and lots of Specialists! Including Neurologist, Paediatrician, specialist dental work, Gastroenterologist, Orthopaedic specialist, ENT, Respiratory specialist, and more! All of these specialists help to keep him well and make him comfortable.

• Specific therapies including Physiotherapy, Speech Therapy and Occupational Therapy

o Physiotherapy –specialist physiotherapist for children who gives Tommy every chance of improving his hypotonia (floppiness) so he is able to hold his head up well, sit independently one day and maybe even walk one day.

o Speech therapy – children with 1P36 are generally non verbal so we need to work very hard on Tommy’s speech therapy. We dream of Tommy being able to swallow properly and hopefully being able to have “tastes”.

• Other Alternative Therapies.

• Specialised disability equipment.

While we never thought we would have to ask for your help, we now realise that to give Tommy every possible chance to have the life he deserves, we need support.

You can help Tommy by:

• Helping TEAM TOMMY seek sponsorships for our Riverwalk. Call Natalie on 0431 451 796 or email natalie0912@optusnet.com.au for further information.

• Joining TEAM TOMMY for Riverwalk this year on 12 September 2010.

• Making a donation online.

Donations of $2 or more are tax deductible. The Developing Foundation Inc. manages all funds raised for Tommy and commits 90% of the funds directly to meet Tommy’s special needs. The balance is used by the charity to cover administration and credit expenses.

The human spirit & the will to live is strong – even in a young boy who is fighting the odds daily. The kindness and support of friends and complete strangers who you meet on this journey is overwhelming. Thank you.