Hearts of the Lakeway Elementary School community are going out for kindergartner Carter Wagner this week.

Carter, 6, suffers from Alternating Hemiplegia in Childhood, a rare neurological disorder that can leave one or both sides of his body paralyzed for a few hours up to episodes lasting 14 days.
Student Council members have teamed with Kardivas, a character-building club for girls, to host a “Hearts for Carter” campaign through Friday to raise funds for a medical study on an experimental drug treatment that could relieve Carter’s symptoms by blocking his episodes.
All this week, the groups will station members outside the school by the student drop off line to distribute paper hearts and paper heart necklaces for donations. Donators put their names on the hearts, which are taped to the walls of the school’s front foyer.
“There’s a lot of hearts. We hope to have the foyer covered by the end of the week,” Kardivas volunteer coordinator Kara Gaskamp said.
The groups also have a station inside where they hand out hearts and collect donations. After two days, they had collected $709 for the Wagner family.
“[The girls] are just like cheerleaders,” Gaskamp said. “They really have embraced this. They are putting so much effort into it, and you can tell they truly care about it.”
Anyone wishing to make a donation at other times of the school day may do so at the school campus. All checks should be made to Kardivas, Gaskamp said.
“We’ll combine the money and present the family with one check at the end of fund-raiser,” she said.
Although Carter and his family moved from Minnesota to Lakeway in August 2009, the community already is rallying around their cause.
“We feel blessed between teachers, and principal and everybody else. It’s been an amazing feeling to us just have everybody behind us and really working hard and trying,” said his mother, Sara Wagner. “It’s a really good feeling to know that so many people who hardly know us care and want to help.”
When they first moved to Lakeway, Sara said she was uncertain if students would accept Carter, but the warm reception has touched the family.
“The kids [at school] have been really accepting of him,” said his mother, Sara Wagner, adding that when they see Carter they always hug him and shout his name excitedly.
The outpouring of support has overwhelmed the Wagners, but they didn’t find much sympathy from the medical community when they first noticed something was wrong.
Carter suffered his first episode when he was 2 weeks old. His eyes shifted to the side and started twittering, his arm stiffened and he started crying.
Another attack struck two weeks later and more followed. When he was 9 months old, Carter experienced his first full paralyzation. However, when the Wagners took him to the emergency rooms, his symptoms would vanish by the time doctors saw him.
“For months they just kept telling me I was an overprotective mother, he’s fine, there’s nothing wrong with him. Take him home and love him” Sara said. “I think in a mom’s heart you just know when something isn’t right.”
When their frustration hit its limits, the Wagners took him to the Mayo Clinic in Rochester, Minn.
“I was done dealing with our hospital and telling me he was fine,” Sara said.
Visits to The Mayo Clinic and Children’s Hospital of Minneapolis and rounds of tests first produced similar conversations, but then doctors suggested that Carter might have Alternating Hemiplegia in Childhood when Carter was 1 year old. Doctors there hesitated in diagnosing Carter with AHC because it is extremely rare. Approximately 330 cases of AHC have been documented throughout the world. Its causes are unknown, and there is no known cure for the disorder, according to the Alternating Hemiplegia of Childhood Foundation. No tests exist that can detect it.
“With only 300 cases in the world, there’s no financial justification for pursuing a cure,” said Carter’s father, Todd Wagner. “The last thing the doctor told me — he patted me on the back — was, “Wish there was more we could do, but if you can come back with a billion dollars we’ll fix it.”
High stress activities, colds or upper respiratory problems are believed to trigger attacks, according to the foundation’s web site. Children with AHC are affected by bright lights, wind, temperature changes and exposure to water. Many attacks occur without an apparent cause.
A Canadian doctor administering GHB on his daughter to induce sleep reports it completely blocks her episodes. The FDA has not approved the drug because it is a component of Rohypnol, an illegal street drug. Before U.S. doctors may prescribe GHB legally, a study of the drug must be completed that finds it may be administered to treat specific medical conditions.
Todd estimated his family and others would need to raise about $500,000 total to secure a 90-day trial.
If this study is not completed and the drug does not become available Carter will continue to have episodes of paralysis and deteriorate mentally and physically.
Other than moving to Texas for its warmer climate, which seems to have helped Carter, the family says there is not much else they can do but hope for the study and pray for positive results that would lead to FDA approval.
Some children with AHC have reported prescription drug Flunarizine lessens effects, but the Wagners say the drug, which they had to buy from Canada, turned Carter into a different child than the ebullient 6-year-old who loves to build with blocks and do arts and crafts.
“You would look at him and he was just not there. We would rather have him have a good quality of life and not be spaced out,” Sara Wagner said.
Sara and Todd said as their son gets older he is adapting to partial paralysis by limping along and battling through the episodes.
“He’s got a fighting mentality. You take away half of my body and I’m not getting out of bed,” Todd said.
Carter’s older brother Tanner, 9, said that he is more skilled at identifying the onset of symptoms and communicating that to the family.
Since moving to Texas, Carter has suffered paralysis three times, but that is far fewer episodes than he experienced in Minnesota.
“This year has been so different for us. It’s been much better since we moved down here,” Sara said.
The causes of hemiplegic attacks differ among children.
Carter’s attacks occur when he gets overexcited, as happened recently at friends’ birthday parties or when relatives visited the family for Christmas. Drastic changes in outdoor temperature, cold bath water, flashbulbs and fireworks are potential triggers.
“Anything that stimulates a certain portion of his brain” will set it off, Todd said.
Normally a high-spirited, fun-loving child who cheers his brothers on when they play baseball, Carter will pinch, bite, hit and scratch others when he is suffering partial paralysis.
“He’ll get in his brothers’ faces. Whatever is going on, he’s trying to disrupt it,” Sara Wagner said.
When he is completely paralyzed, she said Carter behaves like a toddler and wants to be carried or held most of the day.
“It’s tiring, but he is one of the best cases. Most of the kids [with AHC] are completely wheelchair bound, can’t talk and are drooling all the time,” Sara said. “We just keep hoping and praying that he doesn’t regress enough that he ends up like the rest of the kids.”
In the meantime, Carter and his family take one day at a time as they try to raise awareness and raise money. The Wagners have raised about $100,000 by hosting golf tournaments in Minnesota, selling bracelets and other fund-raisers.
For information on Alternating Hemiplegia of Childhood, visit www.ahckids.org.