By Kelsey Parkinson
Williamston Post Staff Writer
Imagine your child or grandchild being born with a disease that doctors and nurses could not identify because it is so rare.
Williamston native Crystal Amon’s grandson Hunter is living with Moebius syndrome, a disease that has fewer than 4,000 known cases worldwide.
Moebius syndrome is the lack of the 6th and 7th cranial nerves, according to Moebius Syndrome Foundation co-founder Vicki McCarrell.
“The 6th and 7th cranial nerves—there are 12 total—control very critical things,” McCarrell said. “The 6th cranial nerve controls lateral eye movement, while the 7th controls facial movements such as smiling, frowning and blinking.”
Amon said half of Hunter’s face is paralyzed, and he also has a deformation where his jaw appears crooked.
“One side of his mouth overlaps, where the other side, the teeth don’t touch,” Amon said.
The syndrome has additional attributes, such as club feet or webbed hands or missing digits.
“About 50% of the children born with Moebius syndrome are born with club feet,” McCarrell said.
Though Hunter does not have malformed hands or feet, Hunter has muscle contracture, which causes him to have a shortened Achilles tendon so he walks around on his toes.
“He had lost all range of motion in his legs,” Amon said. “As long as he keeps growing, he will continue to have problems with his legs.”
Every time he has a growth spurt, Amon said, he has to go into soft casts where he gets
re-casted every week to regain his range of motion. He then will be casted until the growth spurt is done, and then the doctors put him into braces.
“Right now, he’ll have to have two more adjustments with his braces until he hits another growth spurt,” Amon said. “This could be until he is 18 or 20 years old.”
Amon also said that “tall genes” run in the family, so while Hunter may be only 5, he looks as though he is 8 years old. His doctors estimated that he would be about 6’7” when he’s done growing.
As far as the facial paralysis goes, McCarrell said there is a gracilis muscle surgery perfected by Toronto plastic surgeon Dr. Ronald Zucker, better known as “the smile surgery.”
“Primarily in children, Dr. Zucker takes the gracilis muscle from the inside of the thigh and transplants it into the missing cranial nerve space, and ties it in with the face so they can chew,” McCarrell said. “It takes about six weeks to work. Once that happens, they can smile.”
Amon said Hunter went through speech therapy starting at the age of 3, including learning sign language.
“As soon as he learned sign language, he was a new kid,” Amon said.
Hunter is also mildly autistic, Amon said, and he is placed in a disabilities class at school in Williamston.
“The disabilities class has made a world of difference with his social skills,” Amon said.
Amon, who said she would do anything for her “little man,” is planning a benefit to raise money to attend the next biennial convention held by the Moebius Syndrome Foundation. The next conference is July 18-20 in Bethesda, Md.
“My goal is to find out as much as I can, and do as much as we can while he’s young,” Amon said.
Amon is a member of the of the Fraternal Order of Eagles, a national organization whose motto is “People Helping People,” and is on the Eagles’ benefit committee.
“All of the money that we raise during the events, we give to charity,” Amon said. “They’re constantly trying to do things to raise money for others.”
Amon is hoping to hold the benefit this spring through the Eagles, and wants to have an auction, dinner, and even possibly a band play. Amon owns CC Embroidery & Gift Shop, where she said she has received a lot of offers from customers to donate to the auction.
“A lot of businesses, who are also my customers, are interested in helping,” Amon said. “They tell me, ‘just let us know and we’ll donate.’”
Amon runs everything past Hunter’s mother, Tara Haynes, to ensure that “she is comfortable.”
“She’s all excited, and she cries,” Amon said. “She doesn’t want Hunter, who is a really cute little boy, to be picked on.”
Amon’s main focus with the benefit is to raise enough money to attend the convention, but would hope to raise more money to help fund a jaw-correction surgery for Hunter. Currently Hunter’s state-funded insurance is being denied.
“We met with an oral surgeon in Lansing, who sent us to the University of Michigan hospital,” Amon said. “But his insurance is being denied there.”
Amon also hopes they can raise money to also fund the “smile surgery.” She said she wants to meet with Dr. Zucker and see what action they should take in regard to Hunter’s condition.
Hunter was originally misdiagnosed with Bell’s palsy at a month old, when he started physical therapy. He was finally diagnosed with Moebius syndrome when he was about 7 months old.
“It took tons of doctors,” Amon said.
Despite the challenges she has faced, Amon is passionate and said she would do anything to help her grandson, and cannot wait to move forward with the benefit plans.
“How exciting is this, to be a part of something that’s so rare, and bring awareness,” Amon said.