Local boy Graysen Fawcett is a pretty typical first grader. He’s a “rough and tumble” kid with a lot of energy, according to his mother. He likes video games like Minecraft and Super Mario. He’s got an older sister, Arianna, who looks out for him.
One of the things that makes this 6-year-old unique, though, is the very same thing that got him a total room makeover this weekend: Graysen has hemophilia. Nominated by a nurse, Graysen was the recipient of a Make-a-Wish Foundation wish fulfillment that brought him a new TV, several video game systems and a video game library.
Volunteers, friends and family gathered to celebrate the reveal of his wish Saturday at the Juneau Gymnastics Academy in the valley.
The group had spent the morning setting Graysen’s room up while his mother, Marion Fawcett, distracted Graysen and his friends with a trip to MacDonalds. When the room was finally ready, they showed him pictures of the results at a party at the gym, complete with a Super Mario cake.
Graysen couldn’t wait to get home and try out the new Playstation 4, Nintendo Wii U and the virtual reality headset he received.
“I did not know it was going to get that much decorated!” Graysen said of his room.
What’s first thing he’s going to do when he gets home?
“I’m gonna play video games all night!” he said.
The volunteer effort to bring Graysen a little joy took about a year and a half. Three Juneau women, Kelsea Goodell, Erann Kalwara and Lisa Mielke, made it happen.
The Anchorage Make-a-Wish Foundation office assigned the trio to the job. It was the first wish the three women had worked on for a Juneau local.
They were all surprised by the generosity of local businesses. They don’t remember getting any requests for donations turned down.
The reveal was “like Christmas” Goodell said.
“We’ve been excited for months. My heart was beating this morning. I was up at 8 and that doesn’t happen,” she said.
“We’ve all just been vibrating,” Mielke said.
Hemophilia is a genetic disorder decreasing the ability of blood cells to clot. So if Graysen gets even a small cut, he could keep bleeding. He’s got only about 5 percent of the normal amount of factor VIII protein, a component of blood which acts as a glue for platelets which form fibrous plugs when blood exits a blood vessel.
The disorder occurs in about one in 5,000 live births in the U.S. About 20,000 people in the country have hemophilia, according to the National Hemophilia Foundation.
A fever that might mean a day out of school for some kids would land Graysen in the hospital. Fevers can indicate a blood infection, which could be life-threatening for somebody with hemophilia.
Graysen was in the hospital with a fever during Halloween last year. His dutiful sister Ariana, 8, kept him company.
“She’s always been there for him, helping out and looking out for him,” Marion said.
Doctors have known about the disorder since Graysen’s birth.
Treatment was intensive to start. Marion would have to take Graysen to the hospital for infusions of a medication called Alphanate every other day. The treatments temporarily increase the amount of factor VIII proteins in his blood.
Graysen would get spontaneous bleeds in his legs when he was younger but medication lessened the symptoms. Eventually, Graysen’s doctors trained Marion to do the infusions at home.
That was a nerve-wracking experience for Marion, but she eventually became comfortable treating Graysen herself.
“The first time I infused him I stayed up all night crying because I thought I might have introduced air into the system,” she said. “Now it’s just a part of life.”
The Alaska office of the Make-a-Wish Foundation serves about 60 young people every year. That breaks down to about 30 Alaskan children and 30 children from around the country wishing to come to Alaska to fulfill their wish, communications director Hannah Moderow said.
It’s a fulfilling job, Moderow added.
“We are that little spark of joy that kids need when they’re sick. It’s really cool to get to hear the community rally for one of these kiddos,” Moderow said.
The foundation hasn’t had a Juneau wish in several years. Moderow could recall bringing a child up sometime in the last few years for a Juneau fishing trip as part of a wish fulfillment.
Make-a-Wish has three full-time employees in the state. They grant wishes across the state and into rural Alaska and depend on local volunteers to make everything happen.
Moderow said it’s a common misconception that Make-a-Wish only grants wishes for terminally ill children. They actually grant wishes to children with all sorts of illnesses, terminal or not.
“One of the things we care most about is highlighting the communities that make a wish happen, that’s one of the big things,” Moderow said. “We rely on the generosity of volunteers, people like Erann and others.”
Though Graysen’s room is now a gamer’s paradise, his life will continue as normal — only, now he can take that rough and tumble spirit to the virtual world.
“I don’t think he sees it as a challenge, it’s just life. It’s just part of our life,” Marion said.
• Contact reporter Kevin Gullufsen at 523-2228 or firstname.lastname@example.org. Follow him on Twitter at @KevinGullufsen.