Our Families

Team Tommy

Sponsored By

Description

My name is Tommy and I have 1P36 Deletion Syndrome. My Mummy & Daddy say I am courageous and determined, cheeky and funny. During this last year I have learnt that life isn’t just about hospital stays & being sick! There are heaps of fun things I can do now, lots of kind people helping me to learn and grow stronger, and I have a cool big brother and a funny little dog who I love so much. I am trying hard to be more independent so I can participate in life just like you – but I still need lots of help. This is my story, told by my Mummy & 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.

In April 2011, we celebrated Tommy’s 2nd birthday! Around the same time, Tommy learnt to sit up independently for short periods! Reaching these two major milestones reminded us that while Tommy is a little boy with so many challenges in life, therapy is the key to helping him develop and we must never stop doing all we can to give him the opportunities he deserves. Tommy’s 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 (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), recently diagnosed Chronic Lung Disease and weak respiratory system (oxygen dependent at night), painful reflux, developmental delay and other health issues.

On the bright side, Tommy has become SO much more aware and interactive over the last 12 months! Tommy is brave and has a strong will. He yells at the doctors, his teachers and us when he doesn’t like something! Tommy is a joy to spend time with – his smile, big brown eyes, laughter & purity are lovely. He giggles and plays with his toys and likes simple games. He loves cuddles with his Daddy more than anything and is full of love. His hearing and vision has improved considerably over the last 12 months, along with improvements in his low tone.

In recent months, as Tommy’s health has improved, he has been able to share his daily bath with his brother. While a simple joy for many, this experience is so important to Tommy and Harry and the excitement on Tommy’s face, every day, at bath time is breathtaking for us.

Tommy is able to have very small “tastes” of food now but given his fragile lungs, we are focussing more on Tommy’s communication skills than on eating for now. His Speech Therapist is working hard on helping Tommy find ways to communicate effectively – I have no doubt that he knows what he wants to say, but he can’t get the words out. However, he verbalises his feelings so well for a child with limited communication options.

Tommy’s busy week involves attending Xavier Conductive Education and Narbethong Special School to help with his development, appointments with his Physiotherapist, Speech Therapist and Chiropractor and attending regular appointments with specialists and doctors. Tommy loves the dedication and attention of his teachers – he knows they are helping him to learn to do things that are so hard for him, and he is grateful. He is trying desperately to get to sitting position on his own – so watch this space!

There are many adults and children in the world with 1P36, so we can learn from them and we know he needs the following:

• Lots and lots of Specialists! Including Neurologist, Paediatrician, specialist dental work, Gastroenterologist, Orthopedic 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, Occupational Therapy and 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.

• Joining TEAM TOMMY for Riverwalk this year on 11 September 2011.

• 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.

We continue to learn that the human spirit & the will to live are strong – even in a young boy who is fighting the odds daily. The kindness and support of friends and complete strangers who we have met on our journey is overwhelming and a true blessing. Thank you.