COLNE: Parents’ tribute after death of Phoebe (2)

A DEVASTATED family has paid tribute to their smiling and cheeky two-year-old, who lost her battle with a rare disease last week.

Phoebe Frances Ford died at her home in Fern Street after a nine-month struggle with Alpers’ Disease. Her parents, Charlotte and Daniel, have taken comfort in the fact their daughter’s short life was a happy one, and she kept smiling to the end.

Alpers’ Disease is a neurological disorder, which affects only one in 250,000 children.

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Phoebe’s family were unaware she suffered from the condition until she developed a heavy cold last December and suffered a seizure.

She was taken to Royal Blackburn Hospital and transferred to Royal Manchester Children’s Hospital for tests, but doctors were baffled by her symptoms. It was only when a doctor from Burnley General Hospital, who had come across the condition before, examined Phoebe in March, that Alpers’ Disease was diagnosed.

Charlotte said: “When we got the diagnosis we knew very little about Alpers’, so we resorted to searching the internet and reading stories of other children that had developed the condition.

“The disease is terminal and hard to diagnose so many parents only find out when their child is given a post mortem. In that sense we were very lucky as we had time to prepare ourselves and spend some quality time with Phoebe.”

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Alpers’ Disease is genetic condition, which damages the grey matter in the brain, leading to loss of movement and liver problems. It cannot be cured and there is no way to slow down the progression of the illness.

Phoebe suffered frequent seizures, eventually becoming paralysed down her left side, and losing her sight.

Charotte said: “She was so young she didn’t know any different, she just kept fighting and gave life her best shot.

“By the end she even found it difficult to smile, but the day before she died she gave us a big grin.”

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In Phoebe’s final months, her family was given support from Derian House Childrens’ Hospice. Charlotte said: “Unfortunately people rarely know about the good work Derian House does unless their child becomes ill.

“We couldn’t have coped without the staff there, they have been wonderful. They had come across a child suffering from Alpers’ before, and although every child has different symptoms, they could advise us on how to deal with it.

“Play therapists visited Phoebe while she was ill and helped us make some keepsakes, including a painting of her footprints which is special to us.”

Phoebe’s funeral was held last Friday at Skipton Crematorium and her family released balloons afterwards in an act of remembrance.

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She leaves her parents, grandparents Shelley, David, Andrew and Sue, great grandma Kathleen, as well as aunties, uncles and cousins.

Donations are being received for Derian House Children’s Hospice c/o Helliwell’s Funeral Service on 870898.

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