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Isaac's Journey
Isaac is a 15-year-old boy who loves life, he proudly lives with Cerebral Palsy and Sotos Syndrome. Shelley, Isaac’s mum always knew that if she had a son he would be named Isaac. His name in Hebrew means "He will laugh" which he now embodies, however, there was certainly no laughing when he first entered this world.
Isaac was born 6 weeks early and suffered severe oxygen deprivation at birth, he spent his first 11 weeks in Neonate Intensive Care (NICU) where he underwent a number of procedures. During this time his parents were told he had a severe brain injury, and it would be unlikely he would ever walk, talk, eat or interact. Shelley being a nurse was all to aware of what this meant for Isaac and his family; however she would often lock eyes with Isaac and she could see a strength far beyond his frail body, she knew he was saying “don’t give up on me mum”. After 11 weeks, Shelley discharged Isaac against medical advice, knowing the hospital had done all they could for him at that point.
Isaac came home with a feeding tube, and while doctors said this would be with him for life Shelley was determined to seek other answers. At 4 months old Isaac accidentally removed the tube during a nappy change she took it as a sign and worked hard to teach him to feed and the tube was never replaced. At 5 months old, a smile came and not long after, despite the pain Isaac was suffering, he was lighting up rooms with his smiles and giggles.
This is not to say things got easy, Isaac's early life was littered with multiple surgeries, hospital admissions, specialist appointments and Shelley became ‘one of those mothers’ to the medical professionals as she pushed for more and pushed against what 'they' were saying about him, she knew there was more for Isaac.
Finally, while sitting in a waiting room for yet another appointment, Shelley got talking to another mum with a disabled child, where she was asked “do you know Shirley Wilson?” "No, but should I?" While it took 6 months for Shelley to actually call Shirley after being given her number, that moment changed Isaac’s life forever and the journey with therapy began.
Before Isaac began the home-based therapy, he was unable to sit up, had very little head control and poor muscle tone but within 6 weeks his head control improved and he became more aware of his surroundings, 12 weeks later he was able to sit up and from here he continued to gain strength.
This therapy continued full time for 7 years, and at times Isaac hated it but Shelley knew Isaac would say “Thank you for not giving up mum”. This hard work meant that the boy who was not meant to have any life could now be part of his community, he could go to school and engage socially, he could semi-independently feed himself, he is aware of his surroundings and he can walk with the aid of a walker – all things that were supposed to be impossible for him.
Another big round surgery meant that time away from therapy was needed, and time for Shelley was needed to, therapy is gruelling and a huge commitment for the whole family, often we see parents who burn out and become sick themselves and Shelley was one of these parents who had absolutely given everything, all Isaac had achieved was testament to that.
The plan had always been to return to therapy, though of course Shelley was anxious about this, so again there was a conversation with another mum who was doing the Doman programme with her daughter and again a phone call to Shirley.
Embarking on Doman therapy at 14 years old has once again life changing. Doman know all too well that parent burnout won’t allow a child to achieve the best possible results and that therapy needs to fit into real life so they were able to structure a programme that would give Isaac the benefit but still allow Shelley to not lose herself to it. So, with the support of Doman and BICT they began a new programme.
Within months of working with the new program Isaac is more aware of his surroundings,
he’s trying new foods and finding new ways to communicate.
His behaviour and mood changed immensely, he is happy and taking pride in his new achievements,
and even letting go of his walker and testing his balance.
He has always had hypersensitive ears but now is able to wear headphones for periods for music therapy,
something Shelley have never imagined would be possible.
This program has also opened up Isaac to trusting and trying new things, Shelley can see he is getting enjoyment from the therapy and that is all the drive she needs to once again not give up on him, we are all really excited to see where this new round of therapy takes Isaac.
Would you like to help?
We are always looking for volunteers, sponsors, or donations to support us in improving the lives of brain injured children. Thank you for reaching out.