Six-month-old Grace Taylor tragically died from rare disease
THIS smiling little girl was taken from her family after just six months, as a rare disease that affects only one in 6,000 babies had taken over her body before she had even been born.
Now her grieving parents, Laura and Paul Taylor, of Grimsby's St Nicholas Drive, have turned to supporting St Andrew's Children's Hospice as a way of remembering their daughter's short life – and launch it with a fundraiser this Sunday.
The Grimsby Telegraph first met the family of Grace Isabel Taylor, when covering the arrival of leap year babies at Grimsby's Diana, Princess of Wales Hospital (DPoW) on February 29.
As reported, Grace was the second child for Laura, 26, and the fourth for Paul, 36.
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However, the couple's joy at their new arrival quickly turned to worry after they noticed that she barely ever moved.
At first the maternity staff put it down to the fact it had been a quick labour but, as the weeks passed, it became obvious that something was wrong. On Tuesday, July 17 – following numerous consultations – staff at Sheffield Children's Hospital revealed that Grace had Spinal Muscular Atrophy (SMA), a rare neuromuscular condition that affects nerve cells in the spinal cord.
The cells affected by the disease are those that enable walking, crawling, arm and hand movement, head and neck movement and swallowing.
Laura, pictured, said: "Grace was diagnosed with type one SMA, the worst form.
"In one way we were glad to finally have a name for her condition but the worry just intensified.
"We were sent back to DPoW after her diagnosis in Sheffield and told that our daughter would not survive to see her first birthday.
"To hear that just cut us up."
A meeting was held at the hospital in July between Laura, Paul and a team of medical staff and St Andrew's Children's Hospice were also informed of Grace's life-limiting condition.
Despite being given daily medication, she began to deteriorate and, on Sunday, August 19, she was admitted to hospital for the last time.
Experts realised that Grace's body was not responding to treatment anymore and eventually all medication was stopped.
But the little fighter was not ready to give up and survived for another 11 hours on oxygen.
Laura was put into a private room on the children's ward in DPoW, where she was able to cradle her daughter before saying goodbye.
She said: "I have a lot to thank staff up at the hospital for. They made me feel at home on the children's ward.
"Grace took her last breath in my arms and died on August 21.
"Now I am putting all my focus into raising money for the hospice, for the help they gave me before and after Grace's death."