A life-limiting form of severe epilepsy causes Jaylen Osborn to have about 100 seizures a day – leaving the three-year-old from Higham Ferrers in urgent need of a specialist seat to keep him comfortable and safe at home.
So the Newlife Foundation for Disabled Children is looking for people who can help make this happen.
They already have £462 towards the vital piece of equipment, which costs £1,385, but still need £923.
Despite taking 11 types of medication three times daily, Jaylen has eight different kinds of seizure each day.
Parts of his brain are now dying and as it is no longer growing, his head circumference is no longer growing either.
As well as learning difficulties and developmental delay, he is fed through a tube and frequent bouts of aspiration pneumonia have resulted in his lung function deteriorating.
Jaylen is also so unsteady on his feet due to weak muscles in his ankles that he now prefers to crawl.
Walking also exhausts him so much it triggers more seizures.
However, despite his difficulties, mum Lara says he remains ‘an extremely happy little boy’, who is determined to soldier on regardless of his poor prognosis.
During visits to his local children’s hospice, Jaylen is able to use a type of special seating called a P-Pod – essentially a moulded seat on a beanbag base – which is the only place he will happily rest.
Mum Lara said: “He would pat the P-Pod, asking to go in it as he felt safe and comfortable enough to rest there.
“If he doesn’t rest he has more seizures.
“At home he can only sit in his buggy or lie on the sofa, but he will fight to get out of his buggy and hit his head on the metal frame.
“If he is on the sofa, then I have to stay with him in case he has a seizure, but he doesn’t want to be in bed during the day as he wants to be able to see what’s going on around him.”
During the night, or when Jaylen takes a nap in the daytime, he needs to be on oxygen, he is also tube fed three times a day, a process which takes 30 minutes each time.
Having a P-Pod at home would make both these procedures much easier for Jaylen, as well as when he is given his medication.
As he has difficulty controlling his body temperature, a cool liner can also be added into the P-Pod to help when his body becomes too hot.
Lara said: “Having a P-Pod at home would definitely help make a big difference to Jaylen and myself.
“When he is in a P-Pod at the hospice he snuggles down to sleep, but if he is in the buggy he’s too easily distracted by the tubes.
“Having this seat also means I could leave him for a few moments to go to the bathroom or answer the door.
“He has become heavy and bloated from his medication, but at the moment I have to pick him up and carry him with me if I need to do anything as he can’t be left.
“With a P-Pod I would be able to get on with other things, but helping Jaylen to sleep and rest more means he would have fewer seizures and it’s a much nicer place for him to be.
“Jaylen’s mobility will get worse too, so it would be nice to have somewhere comfortable for him to sit and as the chair is mobile he could be with me wherever I am.”
Newlife is appealing for donors and fundraisers who could help transform Jaylen’s everyday life.
To find out how you can support Jaylen, click here, contact the Newlife County Liaison Team on 01543 431444 or email firstname.lastname@example.org.
Newlife guarantees that 100 per cent of monies donated or fundraised in Northamptonshire will be used to specifically help children with disabilities and terminal illness in the county.
Any money raised surplus to requirements for Jaylen will be used to help other local children.