A GOSNELLS family this week thanked local businesses, and in particular their local day care centre, for helping their 10-month-old baby to travel to the US for medical assessment of a rare condition.
Jayda Dillon has a 20 per cent chance of having a stroke due to a complex series of medical problems collectively known as PHACE Syndrome.
The syndrome affects her brain, heart and eyes, and causes her to have a distinct birthmark across her face but dad Matthew said Jayda’s development was like any other little baby despite the fact that her condition was a ticking time bomb.
The family travelled to Texas Children’s hospital to seek further advice from the chief dermatologist and chief of neurosurgery, where the condition is more well-known.
Mr Dillon said the trip cost $15,000 but all of it was fundraised through a silent auction, donations from local businesses and charities, and support from the community, including Buggles Maddington where his two girls attend.
A further $8000 is being saved in case a return trip is needed or if Jayda needs surgery in future.
Jayda is now listed on the PHACE Syndrome registry as one of only 500 in the world, and her parents have signed up for blood and DNA testing to help researchers further understand the condition.
Buggles Childcare senior centre manager Elena Natale said more than $800 was raised across the 10 Buggles centres through the sale of wristbands.
The fundraising campaign was one of several planned for this year under the Buggles Cares project umbrella.