Just4Children are raising money to support a brave, determined and cheeky little boy to give him the opportunities he deserves through access to therapies and equipment not available on the NHS.
Theo is a 3 year old boy from Bishop Stortford in Herts. He has an amazing sense of humour and an infectious belly laugh that can light up the room. As a baby he was always a bit delayed and seemed to really suffer with usual childhood infections, often resulting in a trip to A&E. This delay was put down to being plaster casted until 3 months old and in braces for club feet. At 13 months he had a cold and went floppy, started having seizures and was blue lighted to A&E where he was investigated for meningitis. An MRI of his brain actually revealed a pattern of Leigh’s disease, a mitochondrial disease that effects the body’s ability to produce energy and had caused brain lesions in the areas that control movement.
In the following months he made a miraculous recovery, learnt to sit, crawl, stand and cruise, but then he caught a virus with devastating consequences. It caused a stroke down his left side, followed by his right. He also lost the ability to control any of his limbs, and to hold his head and swallow. The once babbly little boy full of funny noises went silent other than to scream or laugh. He really suffered with dystonia in all his limbs, particularly his legs which were constantly doing the splits.
He had genetic testing and a muscle biopsy that revealed he had ‘PDH deficiency’. In short it means that he can’t process carbohydrates so that energy isn’t able to sufficiently filter through to his mitochondria and power his cells.
Since diagnosis we have fought to get him the right treatments. He is now on the Ketogenic diet and doing well. He’s able to eat normally, use his upper body well and has started saying a few words. However, this has been through a lot of hard work and private therapies.
We aren’t sure what the future holds for Theo but we want to give him the best opportunity to thrive which means fundraising for Just4Children for therapies and equipment that the NHS can’t provide.
This determined little boy deserves so much more!