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 six-month old had a rocky start to life after she diagnosed with type 1 spinal muscular atrophy, a severe medical condition that makes the muscles weaker and causes problems with movement.
Most babies with type 1 SMA die during the first few years of life, due to breathing difficulties.
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However, little Dolcie is due to receive the potentially life-saving treatment at Royal Manchester Children's Hospital on Tuesday, June 15 making her the third baby in the UK to have the £1.8 million drug.
Mam Julie Walls, 38 said: “I noticed Dolcie wasn’t doing as many things as she should at her age, she couldn’t lift her head and her movement was limited.
"She was also constipated and had difficulty breathing, these are the signs people should be looking out for, especially first time mams because everything is new.”
Julie, who is a mam-of-five said the news of Dolcie’s diagnosis came as a ‘big shock’.
She added: “You never think these things will happen to your family, it’s been crazy since we were told the news but we’re just taking each day as it comes.
"We were all absolutely devastated when we first found out but I need to be strong for the rest of the family."
A five-month old baby boy was the first patient in the UK to be treated with the one-off gene therapy called Zolgensma on the NHS last month.
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.
A fundraiser has been launched to help support Dolcie’s family.
Julie said: “We are absolutely overwhelmed that this drug is available because it could save Dolcie’s life – We’re preparing for the worse but I’m feeling hopeful.
“The whole family has come together and it’s been unbelievable to see the whole community come together.”
You can donate to Dolcie’s fundraiser here.