Steep stairs problems for King's Lynn family whose diagnosed child was meant to have 'two years to live'
A North Lynn family are appealing for help to find a new home due to the current one being unsuitable for their six-year-old with an extremely rare genetic condition.
Charlie Sheehan, 6, was told he only had two-years to live after being diagnosed with pontocerebellar hypoplasia (PCH) which means he is unable to walk or talk.
As well as being constantly fed nutritious milk through a tube in his stomach, Charlie is also receiving 24 medicines a day.
A part of his brain did not develop with the family having a dragonfly pattern on their curtains in recognition of Charlie's missing part being the same size as the insect.
While the family are quick to emphasise they are not blaming Freebridge Community Housing at all, their current home at Stag Place is proving to be a challenge as Charlie gets bigger.
Charlie's mother Jodie Bush, 29, struggles to carry her son up and down the steep stairs, which are unable to accommodate a hoist.
The family need somewhere to rent long-term in the Woottons, Reffley or Grange area which would be near to the Queen Elizabeth Hospital, where Charlie receives treatment in the Rudham Ward, and Reffley School for his sister Ella.
Six council houses have already been taken up according to the family, who would ideally need a three-bedroom bungalow.
On her son's condition, Jodie said: "When he comes home from school we can't go anywhere because he has to go straight to bed. Going out in the cold affects his chest so after-school activities are limited.
"His doctor at Addenbrooke's did not know anyone who has lived past six with PCH. He spent three-weeks in hospital born with pneumonia but we did not know there was anything wrong until he was five-months-old. It is a one in 250,000 chance."
Charlie attends a special needs school at Churchill Park, who have been "great" according to Jodie. He also receives respite care at The Nook, run by East Anglia's Children's Hospices, roughly two to three times a month.
Jodie's mother Karen Bush said: "He has all these little fits and seizures regularly. Every day he was smacking his lips and we thought he was giving us a kiss as we would naturally do!
"But he was actually having seizures. All these medicines get delivered to the home all the time, often six boxes at a time. Carrying those up the stairs can be hard, as is holding Charlie as you need to have one hand on the bannister."
Due to the constant care Charlie requires, his nine-year-old sister Ella can miss out according to family friend Josie Sierralta-Veitia.
She said: "Ella misses out on a lot of trips because mum has to be with Charlie. She is adorable but can't go trampolining after school."
Jodie admits that her one-to-one time with Ella when Charlie is at The Nook is difficult because she feels so "tired and run down" due to not being able to sleep at night with Charlie's special bed being next to hers.
The bed was specially fitted, as was a bath to cater for Charlie.
Sophie Bates, director of housing at Freebridge, said: "Freebridge is sympathetic to the enormously difficult circumstances that Miss Bush and Charlie find themselves in, but she is right to say that this is not an easy problem to resolve, principally because we have a very low number of three-bedroom bungalows in our stock.
“Freebridge is committed to providing the very best level of service possible to our customers, and we will do our best to help our tenants where we can, so would recommend that Miss Bush makes contact with us to see whether this is anything we can do in relation to her situation.”
Anyone who is able to rent out a suitable property long-term for the family should call Jodie on 07944 199835.
They have also requested assistance in setting up a fundraising page by contacting the number above.
More by this authorBen Hardy