Just4Children want to raise funds for Daniel to receive specialised equipment for mobility and home adaptions as well as any therapies, aids or equipment to help him communicate his needs.
My little mole is just 3 years old from Surrey and has already been through so much. He was brought to this world via emergency delivery due to insufficient oxygen and has soldiered through every hospital admission, test and treatment with resilience and a determination unrivalled by anyone I’ve ever known.
We now know that in addition to this lack of oxygen, our boy was born with an ultra rare genetic syndrome, Pitt-Hopkins syndrome. While we are still learning about this syndrome, what it means for our happy champion is that he has a severe learning disability, is yet unable to walk, may never learn to talk and will need lifelong care.
Communication is such a basic need. It’s heartbreaking when he’s ill or sad and can’t tell us what’s wrong so that we can fix it. That said, for someone non-verbal he has an awful lot to say sometimes and tries to show you in his way. To help him find ways to express himself more effectively we’re seeking specialised therapy, aids and equipment focused on communication skills so that when he next cries, we’ll know how best to help him.
In addition to this, we’re also looking to make changes to our home to finally enable him to move about freely and safely. Aside from giving him some limited independence, this will also help his cognitive development by growing his confidence in his own abilities and helping him learn life skills.
We want him to live his best life, despite the challenges he’s been handed and would appreciate anything you can do to help him along the way. I can’t tell you how much he deserves it.