Lucas Kiser is some nine years away from starting his college career, but his future high school is already investing in him.

The Eltham youngster has a rare condition known as Stickler Syndrome — a group of hereditary conditions characterised by a distinctive facial appearance, eye abnormalities, hearing loss, and joint problems.

Lucas and his family are going to America later this year to attend the Stickler Foundation Conference to find out more about his condition and see specialists who may be able to help Lucas in the future.

Lucas is the only confirmed case of genetic Stickler Syndrome in medical history and the conference, in Oregon, will enable him to be seen by world experts, helping not just his own case, but also people with it in the future.


Lucas's mother, Sonia, says they have always planned to enrol Lucas at Francis Douglas Memorial College in New Plymouth for his high school years as that is where his father, Michael, went to school.

"While we have that connection with the school, we were still totally blown away when the students at the school's La Salle Hostel contacted them saying they were organising a fundraising evening to help with the costs of the America trip.

Sonia says the charity night, to be held later this month, will involve an auction and entertainment including a talk from renowned political journalist, Patrick Gower, another former student from the school.

The school's dean of boarding, Heta Smith, along with head boarder Jayden Smith and deputy head boarder James Batchelor, are appealing for businesses and individuals to donate items for the auction. They already have signed Hurricanes and Black Ferns jerseys.

The year nine students have written letters to businesses in New Plymouth asking for help, but they would love to hear from anyone else they haven't contacted as well.

As well as auction items, they are asking for equipment or services which can be used on the night.

Heta also says items to be auctioned don't have to be material items, but can also be services such as labour.

Sonia says the support from the school is greatly appreciated by all of Lucas's family, and they are looking forward to the evening.

The fundraising evening is on June 23 at the college. Tickets are $30pp or $27 for a table of 10, from the school.