Lancaster couple Matt and Jenna Humpage are aiming to give their disabled son a better quality of life with the help of the local community.
Five-year-old Jack has a genetic disorder which causes many complex difficulties including delayed growth, poor muscle tone, hearing and vision impairment and limited speech.
He is wheelchair-bound, has no coordination and needs 24/7 care.
But one thing Jack does enjoy is having a bath.
He loves the water and enjoys the time he is able to spend in the pool at Bleasdale School in Silverdale.
And that’s why Jenna and Matt are hoping to buy a specialist bath for their home, in order to allow Jack to enjoy bathing in comfort, something he is currently unable to do.
Jack was diagnosed with 1p36 deletion syndrome at 10 months old, after he began suffering epileptic seizures when he was only six weeks old.
“When Jack was born he was was five weeks premature and I had a planned caesarean section,” Jenna, 33, said.
“He was very petite and was in the neo-natal unit at the Royal Lancaster Infirmary for two weeks.
“At six weeks old Matt noticed he was twitching his arms. They did some tests and found he had had 200 plus seizures within two hours.
“Matt’s brother and mother both have epilepsy so we thought that’s what it was, but two weeks later he went to the Royal Preston Hospital for an MRI scan which revealed that half of his brain hadn’t developed.
“He was 10 months old when he was diagnosed – we were lucky to get a diagnosis because many families don’t and it meant we could take the next step in terms of his future.”
While Jack doesn’t display all aspects of the condition, he does have severe epilepsy, low muscle tone and is severely visually impaired.
He also has low hearing – although this has improved – and no coordination, and is fitted with a gastrostomy feeding tube.
“Everything is done for him,” Jenna said. “We feed, bath, change and dress him.”
“He has seizures 24/7, that is the biggest concern for us. We take everything else with a pinch of salt.
“We don’t know any different. I would be lying if I said it was easy but Jack is a very alert and content little boy.”
The family have had their home in Claughton Drive on Hala adapted thanks to a disability grant and fundraising.
An extension to the house has given the family an extra full-sized bedroom for Jack, with an en-suite bathroom.
A lift was fitted to take him upstairs, and a hoist helps lift him around.
Ramps have been fitted at the front and back of the house, and internal doors have been widened. However, a specialist bath for Jack would really improve his quality of life, Matt and Jenna say.
They currently struggle to bath him and their only alternative is to lay him on a shower tray and shower him “like a dog”.
Matt, a 34-year-old mechanic, said: “At the moment we are using the downstairs bathroom which is great for size but from a lifting point of view it’s hard.
“He can fully extend in the bath and appreciate the size of it, but we are having to physically get in and hold him because it’s not safe otherwise.”
Jenna, who works part-time as a welfare assistant at Moorside Primary School, said: “A new bath would fit in his own bathroom, and the hoist system would take him directly to the bath with no manual handling.
“He could be lifted straight into it and appreciate it fully.
“He loves being in the water. He has swimming lessons at school and it’s a sense of freedom for him. It’s the only chance he has to be able to stretch his legs and express himself.
“From a physio point of view it’s good for him too, because it helps with his low muscle tone.
“At the moment he is being sat on a shower tray. He doesn’t understand that he needs to lay still, and he hates it. It’s so uncomfortable and cold for him, it’s like you would hose down a dog.”
The couple are being helped in their quest by Mandy Hoyle, landlady at The Park pub in Lancaster, who sponsor Matt’s football team Highgrove FC.
“We are trying to raise as much as we can,” she said. “I think it’s an amazing cause.
“Everyone who meets Jack in the pub loves him. He has become such a main part of Saturday afternoons at the pub.
“To be able to give Jack that freedom to enjoy being in the bathroom is a little thing that will make a massive difference to their lives.”
The pub has already held events including a Bierkeller night, a raffle and collections, which have seen around £1,500 raised so far. Local charity the Henry Welch Trust has also pledged £1,000.
The Park are planning future fundraising events including tribute and race nights and a Highgrove reunion evening, and money raised from a charity match between the Park and the Freeholders pubs will also go to the appeal.
“It would be really amazing if we could raise the £7,000 to buy a special bath because Jack loves water and spending extra time in the bath gives him so much joy,” Mandy said.
Many local tradesmen have already promised to carry out any work or provide materials for free.
“The generosity of people is amazing,” Jenna added. “I don’t know what we would have done without Mandy.”
To support the fundraising for Jack’s bath, go to https://www.justgiving.com/crowdfunding/amanda-hoyle-1?utm_id=2&utm_term=MnVW8KZmZ