Two-year-old Isaiah continues to baffle doctors who are still trying to find a diagnosis to explain why he suffers from so many complex and debilitating issues.
He suffered a very traumatic birth, which resulted in a bleed on his brain, and this may be the reason behind his complex medical conditions. He’s been recruited onto a 100,000 genome project as it’s suspected he may have a rare neurological disorder.
Isaiah’s problems became apparent at 4 months old when he had his first seizure and was diagnosed with infantile spasms, a rare seizure disorder. He has a condition called dystonia, which is an uncontrollable movement disorder, causing his muscles to contract and resulting in painful, repetitive movements, and awkward fixed postures. He can’t swallow safely without the risk of food and liquid going down his windpipe, so has to be fed via a PEG (gastrostomy tube). Isaiah also has a severe visual impairment, a lot of issues with poor gut motility, severe reflux/constipation and has problematic sleep.
Isaiah’s mum, Naomi, explains what The Donna Louise means to her family, “The Donna Louise is a massive support, both emotionally and practically. It’s a place we look forward to coming to, full of love and care. Isaiah has an amazing time enjoying the facilities and experiencing various activities. It’s a chance to recharge and just enjoy time with him, let go of the caring role and make happy memories.”
When asked to sum The Donna Louise up in three words, Naomi, chooses, “MAGICAL, INSPIRATIONAL, CARING!”
And to everyone who donates or fundraises for The Donna Louise, Naomi says, “Unless you are in this position, you probably wouldn’t know just how much help it is to families like ours and how we grateful we are. We’d be lost without The Donna Louise...”