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Meet Isaiah…

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…

Isaiah was three by the time he 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.

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, and awkward fixed postures. He can’t swallow safely and is fed through a PEG (gastrostomy tube). Isaiah also has a severe visual impairment, issues with reflux and has 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.”

Isaiah is now five years old and he’s doing really well, he’s a real ray of sunshine. He’s developed so much socially and continues to amaze Naomi by his strength. He has a good understanding of what’s happening around him, he’s engaged and often laughs cheekily. Isaiah attends school full time which has been really positive for him.

His life is ever-changing as there are new diagnosis, equipment needs, medication changes and sleeping patterns, but he has been seizure free for just over two years now, which is amazing.

Naomi added, “Life is still full on. As a lone carer 24/7 you reach burn out at times and it’s an overwhelming tiredness that you can’t recover from because it’s non-stop, full of highs and lows, frequent hospital admissions, appointments and immense love.”

Isaiah and Naomi have been coming to the hospice for several 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, “Coming to the hospice 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 soon opened to the care that was available to us.

“It’s a lifeline having access to these services and Dougie Mac has a funny way of calling offering a break just when it’s needed! Time to recharge, switch off, meet friends, whilst Isaiah gets to enjoy the various activities and facilities on offer and bask in all the attention. Sometimes his friends are also having respite at the same time.”

Summing up the hospice up 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 Dougie Mac, 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…”