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Our Families
- Fundraising Target:
- $ 10,000.00
- Donations to Date:
- $ 10,050.00
Messages of Support
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.
