A mum is hoping to raise awareness of a rare genetic condition which could claim the life of her baby daughter before the age of two.
Abigail Hawtin, of Marsh, was diagnosed with spinal muscular atrophy (SMA) in August at just four months old.
Doctors say that babies with the condition have only a one-in-five chance of reaching their first birthday and a 2% chance of reaching their second birthday.
Abigail’s mum Amy, 33, said the diagnosis was a shock that left her and husband Daniel, 38, devastated.
“To be told your newborn baby will not live beyond two years is the worst news any parent can be told,” she said.
“When you have a baby you sub-consciously think about how they will grow up, where they will go to school or what they will be like as a teenager.
“Abigail will never have that chance.”
Amy – who already had a son Joe, now two-and-a-half – told how Abigail had problems breastfeeding from about three weeks old.
She did not gain weight as quickly as would be expected and, when one week she lost weight, Amy sought medical advice.
A doctor at Calderdale Paediatric Unit found she seemed “quite floppy” for a baby of 11 weeks.
After three days in hospital, SMA was diagnosed.
“It was a terrible shock,” said Amy. “We were braced for a child that may have a disability but not to hear that our daughter might not live past the age of two.”
Abigail has no muscle tone and cannot hold her head up.
She can feed but her swallowing reflex will go and she will need to be fed through a nasal tube.
Unknown to them, both Amy and Daniel carry the faulty SMN1 gene which leads to the condition.
Parents can be tested for the gene.
Amy’s best friend Rachel Fisher-Ives, 43, of Pellon, Halifax, is helping to organise a fun day to raise awareness and money for the Jennifer Trust for Spinal Muscular Atrophy.
The free event will be held at Arden Road Social Club in Halifax on Sunday, November 24 (1pm-6.30pm).
Rachel’s son Rowan Ives-Moody , 14, will have his head shaved at the fun day.
Amy said she was touched that Rowan wanted to help.
“It’s a big thing for a 14-year-old boy to have his hair shaved off,” she said.
SMA affects as many as one baby in every 6,000 born and one in 40 people can carry the faulty gene.
