Community rallies round to help Hastings girl's dream come true

Three-year-old Elsie-rose Nugent has a life-limiting condition called spinal muscular atrophy (SMA) Type 1.

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

Elsie-rose’s mum, Natasha Kelly, of Amherst Road, said: “Elsie-rose has always wanted a bike.

“Her older sister, Evie-rose, has one and always wanted ride on it with her.

“I’ve always been heartbroken because I didn’t know how to tell her that she couldn’t have one, not so much because of her condition but because I wasn’t aware they did special bikes for children with her disability.

“However, we were told about this amazing Theraplay trike fair where we could go and trial them and hopefully find something for her, and we did.

“It was the most amazing and emotional time for us all. Elsie-rose, who we were told wouldn’t make her first birthday, let alone nursery, was now on a trike and was so happy.”

Her family then found out a specially made trike for the youngster would cost more than £1,400.

Natasha added: “We as a family got together and chipped in £100 each but we still needed to raise more than £1,000. We spend a lot of time at Beauport Holiday Park and they asked if I would like to hold a raffle on one of their event nights.

“On the night they raised enough money for us to be able to purchase Elsie’s trike.

“There were so many generous people who donated prizes.

“We would like to say a big thank-you to Clare Ide and the staff at Beauport Holiday Park for arranging it all. We as a family are so grateful.”

Elsie-rose was diagnosed with her condition in September 2014 after she and her family were involved in a car crash.

She started injections of the drug, nusinersen, marketed as spinraza, in May this year, which her mum described as ‘miracle medicine’.

She said: “Elsie-rose is doing really well and getting stronger slowly.

“She can now sit up for around 50 seconds, which might not seem a long time to many but is to us.

“Doctors reckon one day in the future she will be able to walk.”