Conference invaluable for family
A journey to the United States helped an Eltham family learn more about their son’s journey as he lives with a rare condition.
It was the kindness of strangers, along with friends, family, schools, businesses and charitable groups, that got Lucas Kiser and his family to the American Stickler Syndrome Conference in July this year, and his mum Sonia says the family want to thank everyone who helped.
“We have just been totally blown away by all the help and support people gave us to get us to the conference. It’s been really humbling and we just can’t say thank you enough.”
Four-year-old Lucas was born with Stickler Syndrome (hereditary progressive arthroophthalmopathy and genetic malfunction) as well as myopia and glaucoma. With very few people living with the syndrome in New Zealand, getting to meet other families on a similar journey was invaluable, says Sonia.
“It was definitely overwhelming at times. I don’t think either Michael or I really understood just how severe the syndrome can become, so it was certainly confronting at times to see what Stickler Syndrome can be like.”
The family already knew Lucas’ case was rare, and Sonia says no one else at the conference had been born with all three conditions that Lucas was born with.
“No one else had had all the surgeries he has had so soon in their life either, not at such a young age.”
Being able to make the connections with other families as well as medical specialists has been invaluable, says Sonia.
“We have already benefited from things we learned at the conference. Within a short while of coming home, an audiology test identified Lucas has fluctuating hearing loss.
“I knew there is a device called a BAHA thanks to meeting people with them at the conference. They are bone anchored hearing system designed to use your body’s natural ability to transfer sound through bone conduction. Thanks to the conference I knew to ask if this was an option for Lucas.”
Sonia says attending the conference also gave them some insight into how fortunate they are living in New Zealand.
“Listening to people talk about the costs of treatment over there, it reminded us how fortunate we are in New Zealand with our healthcare system. We also have great access to complementary treatments here, which we use as well when needed like naturopaths and they are affordable too.”
Another difference, says Sonia, is in attitude.
“I think the Kiwi attitude of she’ll be right does come through in how we parent. We don’t stop Lucas having fun with his brother on the trampoline, we try to avoid wrapping him up in cotton wool.”
Lucas and his brother Andre enjoyed more than just fun on trampolines while in the US, as local charity Team HOPE gave the family tickets to Disneyland.
“We were blown away by that, they had already given us a huge contribution to the cost of our flights, so tickets to Disneyland as well was just amazing.”
Thanks to a great deal when they booked, the two-day tickets were upgraded to a four-day pass, giving Lucas and Andre plenty of time to have fun meeting their favourite characters.
“Both boys were especially excited by Lightning McQueen and the Cars themed stuff there. They had a great time, as did we all. It was just so amazing to be able to take the boys to Disneyland and have that family time together.”
Now the family are back to normal life on the farm in Taranaki and enjoying being home.
“In the first 10 days we were back, Lucas had 13 appointments to attend. It sounds hectic, and it is, but it is also a good reminder of just how great the care he gets here in New Zealand really is.”
■ Follow Lucas’ journey on Facebook: www.facebook.com/LucasKiserNZSticklerGlaucoma
LUCAS and Andre had plenty of fun at Disneyland in California.
CONFERENCE attendees, including Lucas and his family.