Four-year-old Jake Baker from Halesowen (B63 postcode district) has a genetic disorder combined with autism and uncontrolled epilepsy; he urgently needs a specialist comfy seat where he can sit in safety to recover from seizures and be fed through a tube in his stomach five times a day.
Now Newlife Foundation for Disabled Children is looking for ‘local heroes’ who can help us make this happen. We already have £285 towards this vital piece of equipment, which costs £855. We need your help to find the remaining £570.
We need donors and fundraisers who want to really make a difference, helping us transform Jake’s everyday life. To find out how you can support Jake, go to www.newlifecharity.co.uk/westmidlands and click on the Donate Now button next to his story. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected], for fundraising support. Newlife guarantees that 100 per cent of monies donated or fundraised in the West Midlands will be used to specifically help children with disabilities and terminal illness in the metropolitan county. Any money raised surplus to requirements for Jake will be used to help other local children.
Jake has a complex condition and needs constant supervision; although he can walk, unsteadily, he has little awareness of danger and finds it difficult to cope with the world around him.
Statutory services have provided the family with a rigid functional chair for meal times – but as he is tube fed for around five hours each day, this becomes uncomfortable and often results in Jake having a ‘meltdown’. He needs to be secure while he is fed because too much movement could pull the tubes out of his stomach. Likewise, when he is recovering from a seizure, he needs a comfortable, posturally supportive yet secure place in which to recover.
The specialist seating needed for Jake is called a P-Pod; based on a beanbag concept, the equipment is specifically designed for children with special needs and provides postural support as well as a five-point harness so they can’t fall out.
Jake’s mum Rebecca Baker said: “Jake has to be fed five times a day and each feed lasts somewhere between 40 minutes and two hours. He is too big for a traditional high chair and the functional seat we have been given is just too hard to be comfy for more than a few minutes at a time. He gets very upset when he is in the seat. We thought about getting an ordinary bean bag for Jake, but he needs to be secured so he can’t move around and dislodge his feeding tubes.”
She added: “We have been very lucky to have had Newlife’s help for Jake in the past; they gave us a specialist bed to keep him safe, which is a real life-saver.”
Newlife has provided £1,360,171 of specialist equipment for disabled and terminally ill children in the West Midlands. Jake’s is one of a further 89 families currently working with Newlife, in a bid to secure equipment totalling £66,047.
Pictured: Jake Baker