Chad Nielsen smiles a lot. He's a sweet, vibrant 7-year-old who loves the ocean and his family, including his sweet little sister, Cairo, who wants nothing more in the world than her big brother to talk to her.
"She just adores him," said mother Elise Nielsen. "And he's such a happy kid but because of his syndrome, he suffers every day and there are so many little things he can't get across--communication, activities with others he's unable to enjoy."
Chad is diagnosed with Angelman syndrome (AS), a neurogenetic disorder characterized by developmental delay, lack of speech, sleep disturbance, seizures, among other disabilities. It's caused by the loss or inactivation of the normal maternal contribution to the chromosome 15 area, most commonly by deletion of a segment of that chromosome.
Chad’s chance. This sweet little personality flashes the kind of smile that will melt your heart--and you might not realize every day is a struggle for him. Seven-year-old Chad Nielsen lives with Angelman syndrome (AS), a genetic disorder which causes mobile limitations, seizures, sleeping problems, as well as a lack of speech. This Kihei youth was invited to participate in an important clinical trial this summer in Florida, one that may bring drastic relief, and possibly a cure, to thousands of lives affected by AS. You can show your support for Chad and his ‘ohana on Friday, June 22, from 6 to 10 p.m. at the “Help the Chad Carnival Fundraiser” at Mulligan’s on the Blue in Wailea.
Those affected by AS tend to laugh or smile a lot and experience jerky mobility, but usually maintain a happy demeanor. They are often misdiagnosed with cerebral palsy or autism, according to www.angelman.org.
"It's so hard, as it affects nearly every aspect of his life," said Elise. "But now, Chad has a chance to be a part of medical history, which would change his and others' lives forever."
The Kihei youth has been selected to play an important role in groundbreaking clinical trials at the University of South Florida this summer. These clinical trials may bring drastic relief to thousands of lives disabled by AS, as well as forms of autism and Alzheimer's disease.
According to a Website (clinicaltrials.gov) dedicated to this particular study, The Efficacy of Minocycline in the Treatment of Angelman Syndrome, there is "mounting evidence to suggest that a treatment for Angelman syndrome is not just possible, but probable."
For parents Logan and Elise, Chad's acceptance to participate in this study is a dream come true. However, the cost to travel from Maui to Florida three times this summer has created a setback.
They need our help.
"It will cost over $12,000," said Elise. "Your donation will make it possible to end Chad's seizures, run around with all his friends, and say 'mom' and 'dad' for the first time."
You can support Chad's 'ohana on Friday, June 22, during the "Help the Chad Carnival Fundraiser" at Mulligan's on the Blue in Wailea.
Guests will enjoy performances by singer/songwriter Stef Muzic of O'ahu, and Maui talents including songbird Sebrina Barron, rock marvel Murray Thorne, 'riddim' comrade Marty Dread, and the local reggae sensations of Nuff Sedd.
Yours truly, Trish "da Dish" Smith here, will act as the evening's emcee, steering the festivities along from 6 to 10 p.m., which will also feature some hula hoop and juggling spectacles, as well as a dazzling fire poi performance outside.
Presale tickets are available for $7 at 808 Deli in Kihei, Mulligan's on the Blue or by calling 283-6950. Tickets will also be available for $10 at the door. All proceeds from the event will benefit The Chad Nielsen AS Fund.
Can't attend this Friday? No worries: Visit www.slicebyelise.com to find out how you can help. "Thanks to everyone in the community that's helped put this event together, and already raised funds," said Elise. "You've given our home and other families hope for the future."
For more information about the Help the Chad Carnival Fundraiser, call (808) 283-6950.