Twelve-year-old Anya Bhatti has a rare life-limiting genetic condition which has seen her lose all her skills, even the ability to hold up her own head and neck, which can cause her to choke if she isn’t in the right position.
With nowhere safe to sit at her Stechford home, Anya was often propped up on the sofa with pillows, but would slide down. She also experiences around seven seizures a day so it’s vital she has a safe and well supported place to sit. Now, thanks to Newlife the Charity for Disabled Children, Anya has just the specialist seat she needs to allow her to do that.
Anya’s mum, Farhat, said: “The P Pod from Newlife has made such a huge difference to Anya’s quality of life. She has a condition called Sanfilippo Syndrome which is getting progressively worse. She used to be able to walk and although she never really spoke, she would sing nursery rhymes. Now she is like a small baby. She is so tired all the time and it was a struggle to find somewhere safe and supported for her to rest.”
The £1,301 moulded seat not only supports Anya’s spine, head and neck, it fits to the curve in her spine and will help prevent this from worsening. A harness keeps her securely in place and also gives her a safe place to receive the feeds she needs through a tube in her tummy.
The specialist seat also gives Farhat the peace of mind to go into another room for a few moments or answer the door, something she couldn’t do before. Farhat added: “I know Anya is much happier now she has the P Pod, she is secure and perfectly safe. And if she is happy then I am happy, that’s what I can wish for her.”
Newlife’s Head of Charity Operations Stephen Morgan says: “It’s great we could help Anya, but right now the charity is working with 55 disabled and terminally ill children in the West Midlands in need of specialist equipment and must raise £29,585 to help them. Newlife has already supported 1,641 children across The West Midlands.
“We really want to help change the lives of these children and their families, so we are calling on local individuals, groups, clubs and companies to get involved and support them too.”
- The equipment for Anya was funded through Newlife’s charity partnership with Central England Co-operative. Between 2012 and 2017 Central England Co-operative colleagues and customers raised a total of £1.5million for Newlife, every penny of which is being directly used to provide specialist equipment for disabled and terminally ill children across the retailer’s trading area.