Phoenix Smith at the Billabong Swim School Flight For Phoenix Fair Day fundraiser.
Phoenix Smith at the Billabong Swim School Flight For Phoenix Fair Day fundraiser. Contributed

Phoenix will go to Disneyland thanks to 1500 supporters

OUR communities overwhelming support means that Infantile Refsum Disease sufferer Phoenix Smith and his mum 27-year-old Faune Meise will get to go to Disneyland.

Tweed youngster Phoenix is one of only five children in Australia inflicted with the disease, which means he suffers from developmental delays, muscle weakness, seizures, unusual gait and night blindness.

Phoenix is also afflicted with Retinis Pigmentosa in both eyes and profound deafness, with the disease expected to eventually rob the 3-year-old of nervous functions, motor control and his ability to hear and see.

Thanks to 1500 supporters coming along to the Billabong Swim School Flight For Phoenix Fair Day in Tweed Heads yesterday, Miss Meise will get some much needed help and Phoenix will get a prime chance to have some fun before his condition worsens.

Along with a trip to Disneyland, Phoenix and his mother will be attending the Global Foundation for Peroxisomal Disorders conference in July for the opportunity to learn more about the disease and medical support and treatments available.

"It makes me tear up just thinking about it," Miss Meise said.

"It was just an unbelievable day, there was a steady stream of people coming along.

"I really didn't think there was any real community spirit left, but to know that all those people came out to support Phoenix and our family was beautiful."

Miss Meise said her fiancé Anaru Smith was also thrilled with the show of support for their happy little guy, with the fair raising over $10,000.

"He's always smiling no matter what," Miss Meise said.

"You can always get a smile on him and he's so friendly.

"This meeting of specialists will let us get their opinion on what we can do improve his quality of life."

Kids In Need Association was involved with the fair and the fundraising involved and president Sandy Rogers was astounded by the effort made by the Tweed community.

"I was just amazed by the community and how many people volunteered on the day," she said.

"It's been one of our most successful fundraising events.

"Phoenix has touched everybody's heart, he's such a beautiful little kid."

Miss Meise and Mr Smith also have two other boys, Nate aged five and 21-month-old Kai, who are both unaffected by Infantile Refsum Disease.

Kids In Need Association is still encouraging donations to the Helping Phoenix fund and this can be made by direct deposit into Westpac BSB: 034-234, Account Number: 317 137.