Azaria Moyse, aged 11, is taking on a big challenge with a 10km tomorrow to raise awareness of Pompe, a rare disease that has affected her since birth.
Azaria, of Maple Close, Calne, was eight months old when she was tested for the disease, which affects one in every 40,000 births.
It is caused by an excess build-up of glycogen, a stored form of sugar used for energy, which means muscles struggle to work normally.
The walk, in aid of the Association of Glycogen Storage Disorders (AGSD UK), will see Azaria and her family re-visit the Plymouth hospital where she was born.
She will also visit her first pre-school, first school and the church where she was baptised, along with parents Jo and Ian, brother Isaac, 13, and sister Kezia, 15.
Mrs Moyse, 44, said Azaria was able to study in mainstream education at Holy Trinity School, Calne, thanks to enzyme replacement therapy available on the NHS.
Her daughter began the therapy aged one, and the walk celebrates ten years of a treatment that gave her a new lease of life.
Mrs Moyse said: “When we were first told, the drug she’s now taking wasn’t licensed, so effectively we were given a terminal diagnosis. But there was to be a drug trial and we found out about it.
“I wanted to do something to mark the 10th anniversary. We always consider that she’s got two birthdays: the day she was born and the day she started treatment. That was the day she started living, because before that she was struggling.” Azaria’s walk coincides with a call from Allan Muir, AGSD UK’s development director, for every newborn child to be tested for Pompe.
Mrs Moyse, an assistant at Pewsey Library, said her daughter could walk and swim, but struggled to run so would walk at her own pace.
She said: “She’s a very strong character and I’m sure it’s the disease that has given her this strength of character.
“Azaria is incredibly lucky, because a lot of Pompe children do end up in wheelchairs. They believe it’s down to whether they get treatment early enough.
“It’s a very easy test they can do and it would hopefully save lives.”
To sponsor the family visit http://uk.virginmoneygiving.