Just4Children seeks funds to support Elmo access the therapies and specialist equipment he needs to enjoy a better quality of life.
Elmo is a nine-year-old little treasure, and our absolute hero. He has spent more time in hospital in his life so far than some people will in their entire lives. Although he has come very far from where he started, we are fundraising for Just4Children to try and provide him with the therapies and equipment to support him with his daily challenges and give him a little happiness as he deserves.
Elmo (Elliot) was born 6 weeks prematurely, and initially appeared perfectly healthy. He was a beautiful baby boy, but sadly his blood sugars became so dangerously low in the hours after his birth that he suffered a brain injury. He has been diagnosed with a very rare condition called Tatton Brown Raham Syndrome. He has spent a lot of his life in and out of hospital, including significant periods of time in intensive care.
At 9, Elliot is both mentally and physically disabled. He needs one to one support for most of his daily activities. Unfortunately, Elmo is non verbal and has severe developmental delay. Although he faces challenges in all aspects of his life, he has proved the doctors and the specialists wrong and has truly come out on top.
Elmo is amazing. He’s sociable, curious, funny – and he knows it. His determination is phenomenal. Everything we know about courage and resilience we have learnt from him. We try not to worry about being strong enough to look after Elmo – we are just proud to have someone so incredibly special in our family.
There is no cure for a brain injury, or his very rare genetic condition but there are treatments and therapies that can reduce the impact the condition has on Elmo. We have already seen the positive impact that these therapies have had on his life. Unfortunately, due to unavailable and limited resources, the NHS cannot support regular or intensive therapy for children like him. As a family, we self-fund and fundraise for all of his treatment. The weekly physio, occupational therapy and speech therapy, along with other therapies recommended for children like Elmo, are incredibly expensive and not financially viable for most families. Our fundraising efforts will hopefully enable Elmo to continue his therapies and have access to specialist equipment.
We will continue to fight for him and try to optimise the opportunities he has to enjoy his life as much as he can. We are hoping to raise enough funds for Just4Children to support Elliot’s intensive therapies and specialist equipment/sensory equipment over the next 36 months (we expect this to be in the region of £18,000 per year).
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