MATILDA PAGE has the brown eyes and button-nose of a healthy one-year-old, but the Samson baby is fighting for her life.
Matilda is the youngest child in Australia to have Sanfilippo syndrome, a rare degenerative disease that causes fatal brain damage.
Life expectancy for children with the condition is between 12 and 20 years, and there’s currently no cure.
“We are the one-in-a-million chance,” says mother Kate.
She and husband Lachlan are calling on the community to join their family and nearly 50 members from Pioneer Credit to participate in a charity fun run on Father’s Day (September 2), to raise funds for the Sanfilippo Children’s Foundation.
Ms Page says community support keeps her family afloat.
“We have a beautiful girl who at the moment is non-symptomatic, and because of people reaching out and supporting our family, a family they may not have even met, I have realistic hope for our daughter that her life might be different to other kids with this disease,” she says.
“That is invaluable, it means a lot.”
There are about 75 to 100 patients with Sanfillipo in Australia, and the disease is so rare few doctors recognise symptoms.
Ms Page says they cherish every day they have with their daughter.
The charity fun run is from 7:30am-11.30am at Kent Street Weir in Wilson. To find out more go to http://www.hopeformatilda.com.au
by MOLLY SCHMIDT