Phoenix is rising all the way to Disneyland
DISNEYLAND draws closer for Tweed's little battler Phoenix Smith and the community just keeps on giving.
A fundraiser attended by 1500 people earlier this year raised $10,000 to send Phoenix and his mum 27-year-old Faune Meise overseas to Disneyland and a conference Global Foundation for Peroxisomal Disorders in the USA on July 24.
The 3-year old suffers from Infantile Refsum Disease and Retinis Pigmentosa, which means he suffers from developmental delays, muscle weakness, seizures, unusual gait, night blindness and profound deafness.
It is expected the disease will eventually mean Phoenix loses nervous functions, motor control and his ability to hear and see.
I can't even put into words how thankful we are to everyone in the community.
But some more well deserved good news has come for the family, with Miss Meise's fiancé Anaru Smith likely able to travel with his son and wife-to-be thanks to another fundraiser organised for 3pm Friday June 19 at Billabong Swim School .
Stephanie Gilmore, Joel Parkinson and various surfers from the Association of Surfing Professionals have signed a 2012 board, which the association gifted to be raffled off on the day.
"We're really really excited to meet everyone at the conference and to head overseas...it's starting to feel real," Miss Meise said.
"We're just starting to get everything together for the big trip, visas and suitcases and everything.
"I can't even put into words how thankful we are to everyone in the community."
Miss Meise said Phoenix was excited for the trip and had been in good spirits in the lead up to his special holiday.
"He's doing really well, still enjoying his swim lessons and we've started showing him pictures of aeroplanes so he knows what's going on and he's ready for the trip," she said.
"It's wonderful that he's (Mr Smith) coming so we are able to share in the memory together.
"To have everyone in the community helping Phoenix, I just didn't know there was this much community spirit anywhere."
Kids In Need vice president Sandy Rogers has been there to help the Smith-Meise family all the way through their unusual ordeals and was overjoyed with the fundraising successes so far.
"It's just such a good news community story," she said.
"I'm very proud, it's been one of the biggest community fundraisers I've done and I've been doing this for 35 years."
Miss Meise and Mr Smith have two other boys, Nate aged five and 21-month-old Kai, who are fortunately both unaffected by Infantile Refsum Disease.
Billabong Swim School is located at Ourimbah Rd, Tweed Heads.