Con­fer­ence in­valu­able for fam­ily

Stratford Press - - News - By ILONA HANNE

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.

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