Last year we met the Kiser family from Taranaki, who were raising money to visit America to attend a conference about Stickler Syndrome. Jai Breitnauer caught up with them to see how it all went.
Five-year-old Lucas Kiser was born with a rare form of the already exceptionally uncommon Stickler Syndrome.
The hereditary progressive arthro-ophthalmopathy and genetic disorder is characterised by structural problems of the eye and unusual facial features and can lead to retinal detachment. Lucas’ version is particularly rare, combining Sticklers with severe myopia and glaucoma, which affects just 5%-10% of people with the condition, resulting in him having more than 40 procedures in his short life.
“When we heard about the conference in Portland, Oregon, we were really keen to go along,” explains Lucas’ mum Sonia. “There are no other Stickler patients in New Zealand like Lucas. We wanted to talk to medical experts, but also meet families who are having a similar experience to us.”
For the Kiser family, the cost of taking two adults and two children to the US was prohibitive, but a Givealittle campaign, coupled with a huge amount of generosity from local charities and fundraising groups in Taranaki, not only put them on a plane to America but international charity organisation Team Hope offered the family tickets to visit Disneyland as well.
