Six-month old Sunderland baby recovering well after being third baby in the UK to receive £1.8 million drug to battle rare disorder
An six-month old baby girl from Sunderland has been the third baby in the UK to receive a £1.8 million gene therapy drug and is ‘recovering well’ in a battle against a severe muscular condition.
Dolcie Walls Atwill was born six weeks premature on December 26, 2020 weighing 5lb 7oz to parents Julie Walls and Lee Atwill who live in Houghton-le-Spring.
The nearly seven-month old had a rocky start to life after she diagnosed with life-threatening type 1 spinal muscular atrophy, a severe medical condition that makes the muscles weaker and causes problems with movement.
Now, the little fighter has received life-saving gene therapy treatment at Royal Manchester Children's Hospital on July, 1 making her the third baby in the UK to have the £1.8 million drug.
Until two years ago, there were no treatment options available for children with the condition which is the leading genetic cause of death for children.
Mum Julie Walls, 39 said: “She is doing absolutely fab, we can’t believe it – It’s been a long process with ups and downs but she’s on the road to recovery.
"Me and her dad have already noticed a difference in her, she’s a lot more happier and will now gurgle and talk to us which she’s never done before.”
The treatment which involved a transfusion through a cannula took one hour before Dolcie was under a 24 hour watch and now needs to take steroids for three months.
Julie, who is a mam-of-five said the news of Dolcie’s diagnosis came as a ‘big shock’ but she is ‘recovering well’ and is due to be transferred back to Newcastle RVI this afternoon, July 14.
She said: “We just want her home now and we’re feeling hopeful, she is showing good signs and we are looking forward to having her back home with her family.
"Everyone has been amazing, from the hospital staff to family, we can’t thank everyone enough.”
A charity day, with face painting, a magician and disco is going ahead on Saturday, July 17 at the Colliery Inn pub to raise funds for Dolcie.
Julie added: “The charity day is to raise funds for Dolcie to help buy things she’ll need when she returns home.
"She is doing amazingly well and we’re now planning the next steps to get her home.”