Isaiah was just four months old when he had his first seizure, and soon after, it was confirmed he was suffering with infantile spasms, a type of seizure disorder. But this was only the beginning for Isaiah and his mum, Naomi...
More than two years on, three year old Isaiah has only very recently received a firm diagnosis for his extremely rare and complex condition. Diagnosed with CACNA1E, he is one of only thirty known children world-wide to have this condition, and given it’s rarity, there is still very little research and knowledge available. It means that alongside frequent and more extreme seizures, he has severe neuro-developmental disorder, as well as dystonia, an uncontrollable movement disorder which causes his muscles to contract, resulting in painful, repetitive movements. He can’t swallow safely without the risk of food and liquid going down his windpipe so has to be fed through a tube, as well as severe visual impairment and problematic sleep.
Naomi explains, “Isaiah’s condition means a very different and challenging life; I’m a carer forever and my life is centred on Isaiah and his needs. Life is a never-ending pattern of hospital appointments and referrals, as well as constant battles to get Isaiah the equipment that he needs. There’s not much time for fun, and for him to just be a child.”
But despite it all, Isaiah is a happy and sociable little boy who takes everything in his stride. He loves nothing more than enjoying the outdoors and feeling the sun and wind on his face. Isaiah and Naomi have been coming to The Donna Louise for nearly two years, and whether he’s enjoying the sound of the twinkling piano in the music room, or mesmerised by the bright and colourful lights of the sensory area, it gives him time to have fun, to smile, and to be a child.
Naomi continues, “Isaiah loves coming to the hospice. It means he can have dedicated one-to-one attention with someone other than me, and can take part in lots of different therapies and activities which help him relax. All of the care staff, doctors and nurses at the hospice are all working together for him and really see the whole picture.
“Coming to The Donna Louise for the first time was daunting; I always thought it was just for children with cancer, and didn’t know what to expect, but my eyes were really opened to the care that was available to us. I now know that I can take Isaiah to the hospice, where it enables me to have a break from being a carer and we can just enjoy spending time together to make happy memories. It’s a chance to get some sleep, to talk to other parents who understand how I’m feeling, and to be around people who listen, while knowing that Isaiah is having loads of fun and receiving amazing care.”
Thanks to the Social Worker at The Donna Louise, Angela, Naomi and Isaiah have been able to access practical help and support...
“Angela has played an amazing role in helping us access funds and support for Isaiah’s needs. It’s been a long, difficult and stressful process to get things like house adaptations, but thanks to Angela she’s helping us find ways to get there.”
Summing up The Donna Louise in three words, Naomi said, “magical, inspirational and caring!
“It’s a bright happy place with lots of love and care. It’s like a big family, and a welcoming home.”
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 them...”