The Aaron Lewis Foundation has stepped in to purchase a specialised bed for a little boy with a severe neuro-genetic condition.
The UrZone safety travel bed will allow three-year-old William Goodson to sleep better during hospital visits, trips away with the family, and occasional use at home.
After his birth in 2016, it was apparent William had significant health issues, including breathing difficulties. Over the coming weeks, he suffered a catalogue of problems that put his life at risk.
His mum Emma, 38, said: “At the time, there was no reason to believe he was neurologically impaired. I knew something was wrong with his movements and he had zero interest in toys, and never slept.
“We didn’t realise that some of his odd behaviours and movements were seizures until he had a 3.5-hour tonic-clonic convulsive seizure, including stopping breathing, at seven months old.”
For William, a monthly cycle of life-threatening seizures and hospital stays followed as medics tried to investigate what was going on.
As well as refractory epilepsy, he was diagnosed with a life limiting condition called pseudomonas aeruginosa – a bug in that lives in his lungs and attacks his respiratory system.
Then, in June 2017, William spent a week in hospital after suffering 12 hours of cluster seizures. What followed was a diagnosis of Angelman syndrome.
The condition causes, among other things, a sleep disorder, movement disorder, coordination and motor issues, communication impairment, difficulty swallowing, a slow brainwave pattern, a small head, a flat-backed head, albinism, vision issues and severe, complex, life-threatening epilepsy.
Emma, who is married to Andy, 38, with whom she also has baby son Eli, added: “William is a brave boy with all he’s been through and always bounces back with a giggle and a smile – even after a seizure if he can!
“He will never lead an independent life and move out and have his own family. We may never hear him say mummy and daddy or I love you. He will have one-to-one care for his whole life.
“He has zero sense of danger and combining all his respiratory, reflux, epilepsy, ambulatory, learning difficulty issues and sleep disorder you can understand our biggest fears come at bedtime.
“We never know if he is going to be alive in the morning.”
The bed provided by the ALF will, hopefully, ease some of those concerns.
After he tried a test version, Emma said: “William loved it. He was even able to safely crawl in and out by himself so he could go and relax or have a nap, which is unheard of.
“At night, the bed zips up to prevent him getting out and hurting himself when no one is watching. It allows a potentially life-saving monitor to communicate with the display tablet.”
Emma and husband Andy are no strangers to fundraising, having completed numerous runs and bike rides for charity in the past. She added: “We never thought we would be a family that required help.”
The family also has a fundraising page to help cover the costs of William’s ongoing therapy. You can find out more at https://www.justgiving.com/fundraising/william-goodson