Elmo is a one-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 to try and provide him with the things he will need in order to develop to his full potential.
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 spent the first month of his little life in intensive care, and due to his poor muscle tone, he subsequently spent many months in an out of intensive care, and having to be ventilated due to severe respiratory infections. Many times in the first year of his life we were unsure if he would survive, as we were informed by Elliot’s neurologist that it was unlikely he would see his first birthday.
But Elliot has defied all odds. So far, he has proved the doctors and the specialists wrong and has truly come out on top. He is a real fighter, but it may be several years until we truly understand his prognosis. In the meantime, we will continue to fight for him, and try to optimise the opportunities he has to enjoy his life as much as he can.
Elmo has a cortical visual impairment, delayed development and has very low muscle tone….but he is a very strong-willed and determined little boy. He is not a fan of his twice-daily physiotherapy at home, nor his daily private therapy but he continues to surprise us with his grit and strength. Every day is a struggle for him, and us, but he overcomes every challenge that he has so far been faced with.
We hold on to the hope that every one of our dreams for him will come true, and with continued extensive therapies, stimulation and all the love that we can give, he will one day walk, talk and be the independent little boy we know he can be.
There is no cure for a brain injury, but there are treatments and therapies that can reduce the impact the condition has on Elmo. In time, these may help him achieve some independence. 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 weekly physio, occupational therapy, hippo therapy, CME, fortnightly visual therapy and speech and language therapy. In addition to this weekly schedule, we hope to soon provide him with intensive courses to aid him in achieving his development goals and reach some delayed (and previously thought unattainable!) milestones.
One of these courses is held at Kids Physio Works in Colchester, a leading institutions specialising in child neuro-rehabilitation. The biggest benefit for Elmo at Kids Physio Works is thersauit which is known to help improve muscle tone.
We also hope for Elmo to continue at Bobath, a centre for children with neurological disorders. They offer intense therapies that help stimulate and encourage development, increase self-esteem and help children like Elliot gain some imperative independence.
He would also benefit hugely from the input of the NAPA centre, who are travel from California to the UK to offer an IMOT programme (intensive model of therapy), an innovative child treatment program that is designed to help children meet their developmental milestones.
These, 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 access these amazing facilities and have a better quality of life than what he would face without them. We are looking to raise enough funds for Just4Children to support Elliot’s intensive treatments over the next 36 months. We hope that we can arrange a trip to the Adeli centre, an intensive block of therapy with the NAPA centre and a block of treatment at Bobath and at Kids Physio Works in Colchester. We also hope to continue his weekly private physio, occupational therapy, speech and language therapy and CME therapy. All monies raised will contribute to the cost of these therapies, which we estimate will cost over £60,000.
Should we exceed our fundraising target, if we don’t raise enough funds, or if they can’t be used for any other reason, all money raised will go to Just4Children to help other poorly children.
Our Elmo is a joyful little chap who brings light and happiness to all those around him, especially his big brother Oliver! We know his journey will be difficult and we brace ourselves daily for an emotional rollercoaster of a ride through life with him, but please know one thing – every penny donated to his cause will be gratefully received and no matter how much, it will change the life of our gorgeous little man in a great way, forever.
Eliot is a gift to us. So let’s give him something back in return!
Let’s make for this extraordinary little boy a life as close to extraordinary as we can!
Thank you for reading our story.