Charity steps in to help Hastings youngster with life-limiting condition

Elsie-rose Nugent, of Amherst Road, was diagnosed with spinal muscular atrophy (SMA) Type 1 in September 2014 after she and her family were involved in a car crash.

The condition causes severe muscle weakness, which can result in problems moving, eating, breathing and swallowing.

The youngster also has curvature of the spine and can only tolerate sitting in a car seat for about 10 to 15 minutes before it starts to cause her back to ache.

Recently, Elsie-rose needed a special car seat as she had outgrown her standard one.

Elsie-rose’s mum, Natasha Kelly, said: “The car seat was not suitable for her at the time and we were squeezing her into it as she had to make her appointments in London. Whenever we go on journeys I have to prop her up with blankets as she doesn’t have the muscle strength to reposition herself. She was not getting the physical support she needed, which made car journeys extremely uncomfortable for her.”

With the specialist car seat costing more than £2,800, and no statutory funding available, Natasha turned to Newlife, Charity for Disabled Children, which provides specialist equipment for children with disabilities and terminal illness.

The charity was only to happy to oblige and now Elsie-rose will have the special seat, which also prevents further deterioration of spine and muscles.

The new seat also has a five-point harness, which is very important due to Elsie-rose’s low muscle tone, keeping her fully supported on all car journeys.

Natasha said she was ‘absolutely thrilled’ with the new seat.

She added: “Elsie-rose will feel more comfortable and I will worry less because I know she is safe. Elsie-rose has been making such good progress and not having the correct seat over time would slow it down. With the new seat she will be supported correctly and be able to travel without pain. It will make a big difference to us all.”

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