Families sharing experiences at the US Stickler conference

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.

“We had four days to relax and just be a family, without having to worry about anything else,” says Sonia. “It was amazing. When we arrived at Disney, Lucas and his brother Andre’s eyes just lit up! They especially enjoyed meeting Lightning McQueen.”

Once at the conference though, Sonia and husband Michael discovered something unexpected – Lucas isn’t only unique in New Zealand, he’s unique worldwide!

“I’d just assumed there would be other people, but no one else we met had been born with the same three conditions or had as much surgery as Lucas, so early,” says Sonia. “I also hadn’t realised just how hard it would be to see others living with the condition. It was very overwhelming – I just hadn’t understood how severe it could be.”

Despite this, the family made many good connections with other families and people in the medical profession and came back to New Zealand armed with information that will help them and their medical team better support Lucas.

“Not long after we got back, for example, we were told Lucas needed a hearing aid,” says Sonia. “I knew from the conference that a Baha device would be a good option. It is bone anchored and uses the body’s own ability to conduct sound to boost hearing.”

Meeting other parents of children with Sticklers was also affirming in terms of the way the Kiser’s approach Lucas’ life. “In the US, families seem to wrap up their kids in cotton wool. They don’t even let their kids ride bikes. We let Lucas do everything. We want him to live life to the full and experience what he can, while he can. I think this is the Kiwi way.”

Since their return, Lucas has lost vision in his right eye due to pressure on the optic nerve from glaucoma. He also had a serious fall when he started school and now wears a high vis vest, so teachers and students are aware of his needs. But Sonia says his school has been very supportive and Lucas is taking part in everything on offer. “In the future there will be things he can’t do. But while he can and wants to, we will support him.”

The family is supporting others too through their monthly glaucoma support group. “I’d do anything to make the lives of other families like ours easier. We’ve had so much help so far, I really want to give back.”

See the original story here.