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Young Missouri boy 'beats all the odds'

Young Missouri boy 'beats all the odds'

May 28th, 2012 by KIM NORVELL, St. Joseph News-Press, via The Associated Press in News

CAMERON, Mo. (AP) - Aiden McVicker's bright smile and high-pitched giggle can light up any room.

The 11-year-old Cameron boy has a lot to smile about - two loving parents and sisters; a long, healthy diagnosis; and a charity that has provided more than $25,000 in scholarships and grants to children with special needs.

Aiden is one of those children, but the money raised in his name does not go to his therapy or doctor's bills.

The energetic boy was born with bilateral anophthalmia, a rare condition in which eyes do not develop during the first 28 days of pregnancy.

"Before he was born we knew there was an issue with his eyes, but that's all we knew about.

We didn't know how severe it was going to be until he was born," said Amy McVicker, Aiden's mom. "He has no eyes, no optic nerve, nothing like that, so the opportunity for him to ever see is probably not going to happen."

The 42-pound boy may not be able to see, but his hearing and vocal chords are very much intact. While non-verbal except for the word 'Mom,' Aiden will make his presence known through loud laughs, screeches and vibrations.

On a Friday evening at the McVickers' home, Aiden plays in the room that's dedicated to him and his schooling, while his sisters, 8-year-old Avery and 5-year-old Addison, surround him with toys.

The room is full of sensory materials - toys and objects that both Aiden has picked and those that are recommended by his therapists. It's walls provide a constant reminder of Aiden's journey, with his old corrective braces and boots hung in progression, and the verse 2 Corinthians 5:7, "For we walk by faith, not by sight," stenciled above.

His parents have home-schooled Aiden since he left the Children's Center for the Visually Impaired at 8 years old. The schooling mostly falls on his dad, Jamey, because his schedule with the St. Joseph Fire Department allows him to be home two full days in a row.

Together they explore their senses and create art, but Jamey says exploration for both the young boy and his family never ends.

"Every minute of the day is a classroom for him, because it's life skills, it's communication, it's self help. So there's not a minute of the day that's not a learning opportunity for him," he said.

"It's inspirational to see how much he truly does understand," Amy added. "You just think of all the things he's got going against him. He kinda beats all the odds."

Bilateral anophthalmia affects about three out of every 100,000 children. According to the Oman Journal of Ophthalmology, the condition is typically coupled with central nervous system and neurological abnormalities.

Aiden's treatment has consisted of protecting the ocular cavity and sinuses from collapsing into the void where his eyes would be. He's had a hydrogel expander implanted into the orbital void to shape his face and help prevent collapse.

He also suffers from neuromuscular scoliosis, which he developed at age 4. In 2006, he had surgery to correct his spine and untether his lower spinal chord. The following year he had a growth rod implanted, which has been adjusted twice every year since.

The good news, however, is Aiden's doctor has said his scoliosis recovery is the best he's ever seen, even going so far to say his case may be better than any other in the United States.

While Aiden's diagnosis has left him unable to walk, stand or verbalize, the 11-year-old has proven his determination time and time again. Aiden can say about three words off and on, and is able to recognize and say 'Mom' when Amy enters his bedroom. Last year, he walked - for the first time ever - in the therapy pool at the Children's Center for the Visually Impaired.

"We appreciate the little things so much more," Jamey said. "When he said 'Mom,' you know, that means a lot. It takes on a little different meaning for us.

"A lot of those little things he has to work so hard for."

When Aiden was 6, his parents decided it was time to give back to the community that has helped them through countless surgeries and hospital visits, and that has helped them find ways to help Aiden learn and grow. They started the Aiden McVicker Charitable Fund and began raising money through an annual golf tournament, Aces Fore Aiden.

"The community we were introduced to when Aiden was born was the special needs population," Jamey said. "And you know what, I can't think of more passionate people about what they do.

The kids that are in these programs are just so heaven sent that we just feel a need to help out in some way.

"We feel pretty blessed with where we're at in life."

This year's tournament, held May 4 and 5, raised more than $14,000, with 250 golfers participating. Since the charity's inception, the McVickers have donated more than $15,000 to high school graduates majoring in fields that benefit children with special needs. They've also donated more than $10,000 in grants to organizations like the UCP or the Children's Center for the Visually Impaired, as well as families with special needs children who need some extra help.

There are no overhead costs to the charity, and all donations collected go directly to those in need. Aiden's therapy is paid for with the help of Senate Bill 40, and the rest out of their own pockets.

"If we can help other people provide what they need for their children, then it's worth it," Amy said.