Little Elsie-rose Nugent has been diagosed with a life-limiting condition which affects one in 6,000 babies.
Her parents are now trying to raise awareness of spinal muscular atrophy (SMA) Type 1.
They are desperate to raise thousands of pounds to ensure 10-month-old Elsie-rose has the best life possible in the time she has.
The baby girl was diagnosed with the genetic condition by Conquest doctors after she and her family were involved in a car crash in Lower Park Road on August 13.
Doctors were concerned over Elsie-roses’s poor mobility and that she had not reached any of the milestones , such as being able to roll.
Blood tests were carried out and her family were told the devastating news on September 26.
Elsie-rose’s mother, Natasha, 25, of Essenden Road, St Leonards, said: “I was heartbroken when we were told the news, as children born with this condition do not normally live beyond 12 months of age.
“Elsie-roses’s three-year-old sister, Evie-rose is very close to her. We are living each day like the last and trying to create as many happy memories as possible. We may be lucky as Elsie-rose may live a good few years yet.”
Mrs Nugent added her husband, James, who is a lance corporal with the Royal Engineers, was also ‘absolutely heartbroken’ over his baby daughter’s illness.
Elsie-rose has been in and out of hospital in the last 10 months because of chest infections and bronchitis due to her condition. Her mum said: “We found out about a new trial gene therapy treatment in the USA but it can’t be used on children aged more than nine months. If we had found out earlier about this, Elsie-rose could have had a chance.
“We are going to raise as much money as we can for Elsie-rose to buy the things she will need, such as a specially adapted pram and car seat.
“I think Evie-rose knows her little sister is not well but we are trying to make good out of this and not be sad.”
Follow Elsie-rose’s journey at https://m.facebook.com/smatype1.