Nine-year-old Liam Kost from Garston in Liverpool has a degenerative condition that affects his muscles. He needs a specialist wheelchair to maintain his independence and health – and a leading children’s disability charity is calling on ‘local heroes’ to help make this happen.
If you would like to support Liam, go to www.newlifecharity.co.uk/merseyside and click on the Donate button next to his story. The equipment costs £4,518. Newlife the Charity for Disabled Children is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness and has supported 631 under-19s across Merseyside.
Liam has the life-limiting condition Duchenne Muscular Dystrophy which is gradually affecting his ability to walk and move. He is still able to take a few steps around the family home, but needs a wheelchair to mobilise outdoors and at school. He currently has a manual chair, but Liam can’t self-propel this – because it is too heavy – and has to rely on family, friends and school staff to push him around, which means he misses out on a lot of fun. It also means he isn’t exercising his arms and chest muscles.
Local wheelchair services have offered Liam a fully powered wheelchair, but his physiotherapist and care adviser at Alderhey hospital are both concerned that this would have a negative impact. Mum Manuela Kost said: “It is important to Liam’s overall health that he remains as active as possible for as long as possible. What he really needs is a power-assisted self-propelling wheelchair. He would have to use his arms to get it going, but the power-assist feature would help him get around. It means he could play independently with his friends in the school playground and at home, but still be getting health benefits. Unfortunately, this equipment is not available locally.”
She added: “Having this sort of wheelchair would really boost Liam’s independence. It would also mean we could all go out and about more as a family – it is very tiring pushing him over long distances, partly because of the weight of the wheelchair, but he is quite a big boy because he is taking part in hospital steroid trials for his condition.”
The cost of the equipment – £4,518 – prompted the Kost family to turn to Newlife for help. However, with UK-wide statutory funding cuts resulting in a 64 per cent increase in applications to Newlife over the past five years, the charity is more reliant on public support than at any time in its 25-year history.
So Newlife is looking for ‘local heroes’ to help fund this vital equipment. You can click on the website – www.newlifecharity.co.uk/merseyside – or, alternatively, contact the Newlife Supporter Relations Team on 01543 462777 or email email@example.com.
Any money raised over and above what is needed for Liam will be used to provide specialist equipment for other disabled and terminally ill children on Merseyside. The charity is currently working with a total of 34 families in the area with equipment needs totalling £17,190. One hundred per cent of all donations goes directly to provide equipment.
Pictured: Liam Kost