Just4Children are seeking funds to support Theo through access to specialist equipment and therapies to give him the opportunities he deserves and a better quality of life. Theo is desperate for some powered wheels for his chair to help him keep up with his friends!
Theo is a cheeky, fun loving 9-year-old boy, from Elsenham, Essex. As a baby he was delayed and seemed to really suffer with usual childhood infections, often resulting in a trip to A&E. This delay was put down to his legs being in plaster casts until 3 months old and braced for club feet thereafter. At 13 months he caught a cold, went floppy and started having seizures. An MRI of his brain revealed a pattern of Leigh’s disease, a mitochondrial disease that effects the body’s ability to produce energy and resulted in brain lesions in the areas that control movement.
In the following months he made a miraculous recovery, learned to sit, crawl and even started to walk, but then caught another virus. He lost the ability to control any of his limbs and couldn’t hold up his head or swallow, the once babbly little boy could only cry or laugh. He really suffered with dystonia, particularly his legs, which were constantly doing the splits.
He was diagnosed with ‘PDH deficiency’. In short, it means that he can’t process carbohydrates, so energy isn’t able to sufficiently filter through to his mitochondria and power his cells.
Since his diagnosis we have fought to get him the right treatments. Intensive physio has helped to build back his upper body strength, but the communication between his brain and legs has never returned.
Theo is on a strict, medical Ketogenic diet and overall doing well, but he does have a lot of ups and downs, one day he can be loving life, super strong, full of chat, but the following day he can lose his speech, strength, coordination and feel very poorly. Most days he has pain in his legs from dystonia, which recently exacerbated his hip dysplasia and resulted with both of his hips becoming dislocated and having to be surgically reconstructed.
We want to give Theo the opportunity to thrive and enjoy his good days, maintain strength, and give him the chance to build himself back up after periods of illness. This means fundraising for therapies and equipment that the NHS cannot provide.
Alongside regular physiotherapy, at the top of Theo’s wish list are some powered wheels for his wheelchair to allow him some independence and to keep up with his school friends.
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