A Towcester father will hike up Mount Kilimanjaro later this year to help raise funds for the hospice which takes care of his terminally ill baby daughter.
In August 2015 Hugh and Demet Taylor’s daughter Melina was born, but eight weeks later she was diagnosed with a rare and deadly illness, spinal muscular atrophy type 1.
The genetic disease causes muscle degeneration resulting in the babies losing their ability to move, swallow and smile, and ultimately preventing them from breathing.
When Melina is feeling particularly poorly the Taylors take her to Helen and Douglas House, a children’s hospice in Oxford, and Hugh wants to repay the care the staff have given his daughter by climbing Africa’s tallest mountain in September.
“You expect a hospice to be a sad place but when you get there all the staff are smiling,” said Hugh.
“They know Melina and it’s not only the help they give to her but also to my wife.
“I want to thank the staff for making Melina’s short life happy. More than anything it’s the fact that they shine a light in an otherwise difficult situation.”
When a baby is diagnosed with SMA their chances of reaching their first birthday are around the five per cent mark.
Melina, however, has fought bravely against the illness and will celebrate her second birthday in two months.
“We as parents have fought for her but in return she has been incredible,” said Hugh.
“We managed to get Melina on a clinical trial which only 120 babies worldwide were on. Unfortunately she ended up being the baby who was given the placebo.
“It was a horrific and frustrating situation but we didn’t take it badly because Melina will help other children in the future to get better.”
The drug is being rolled out in America and Europe after the tests showed that the health of the babies on the drug improved significantly when compared to those on the placebo.
Hugh said: “The fact that Melina has gone through all that, not received the drug, and that she is still with us is amazing in itself.”
On September 10, Hugh will begin the five-day trek up Mount Kilimanjaro accompanied by his best friend Gary Purnell.
He hopes to raise money for the hospice which currently receives little funding from the Government, relying mainly on private donations.
You can donate to Hugh’s cause here.