Having children always comes with a set of challenges. Between school work, daily health concerns and trying to raise well-behaved human beings, parents feel the stress from day-to-day. But for two local couples, the regular day-to-day challenges are combined with a rare genetic disorder.
Blake Robinson is a 7-year-old boy from Maple Valley. He loves baseball and his grandparents. He has a wild imagination and a curiosity streak. Some of his best friends are Renton children Isaac, 8, and Avery, 5, Graham-Anderson. Issac is described as a “mystical” child who loves dressing up in costumes, and truly sees the magic in his world. His brother is more down-to-earth, a young realist full of exploding energy. All three boys also are strong-willed, since they battle with Fanconi Anemia every day.
Fanconi Anemia (FA), is a rare blood disorder that causes its victims’ DNA to not properly heal.
“It’s from a recessive gene,” Brian Anderson, Issac and Avery’s father, said. “Basically how it works is two people both have to be a carrier. And if you create a child together and those genes meet, the baby is born with FA.”
Brian Anderson and his wife, Sultana Graham, have three children together. Their oldest child is 12-year-old Elias Graham-Anderson. Elias did not contract FA.
Most people don’t know if they carry the FA gene, and many carriers don’t procreate with other carriers, which makes the disorder pretty rare. Only one in every 160,000 individuals are born with FA.
The disorder keeps DNA from repairing itself if damaged. FA is usually diagnosed before the age of 14. Because the patient’s DNA won’t repair it self, children affected by FA are more likely to contract different types of cancers, especially Leukemia.
Issac, Avery and Blake have all received bone marrow transplants already. Elias was his younger brother Issac’s bone marrow donor.
“There’s a lot of feelings that go with having your children in surgery,” Anderson said. “Fear is just one of them.”
Anderson said him and his wife, Sultana Graham, met Blake’s parents Emily and Neil Robinson at a special camp called “Camp Sunshine” in Maine. Camp Sunshine is hosted by the Fanconi Anemia Research Fund (FARF), an organization based in Oregon.The couples realized they lived in neighboring cities and became fast friends.
“It’s nice to have someone to commiserate with,” Anderson said. “Because when you first find out, you learn that your child has a shorter life-expectancy. You go through the five stages of grief. But I think all of us try to keep our lives as normal as possible. We won’t become the disorder.”
FA changes how the families’ sons interact with the world, from making friends, to going to school and even visits to the dentist.
“We have to bring a big pile of medical records and paperwork to the dentist,” Anderson said. “It’s not just a regular check-up.”
One way the couples choose to fight for their sons is by hosting a yearly fundraiser called the FARF 5K Superhero Run. This year will be the fifth year the two families have hosted the fun run.
“It’s a way to feel like we are in control of this,” Anderson said. “Also it helps raise fund for FARF.”
FARF is what some in the medical research industry call an “orphan organization,” because it does not receive public funds for its work. Anderson said this is because the disorder is so rare.
FARF does receive some cancer research funding, since those with FA are more likely to develop Leukemia. People with FA who are over the age of 19 are 700 to 800 times more likely to develop some type of cancer.
“So a lot of their research goes directly into main cancer research,” Anderson said. “But because they don’t receive a lot of public funding, they ask families to help fundraise. It’s not just a great way to raise money, it’s a great way to raise awareness.”
The two families started hosting a fun run in Renton, but this year they decided to move the annual event to Lake Wilderness in Maple Valley.
The FARF 5K Superhero Run is a chance for residents to be real-life heroes for children like Blake, Issac and Avery. This is why the Graham-Anderson family and the Robinsons chose the superhero theme.
“We’ve kept it superhero theme since the beginning,” Anderson said. “Because in reality, these kids are so much stronger than you or I.”
The fun run encourages families to come out dressed in superhero regalia. The race is timed but many people choose to jog or walk the 5K.
Money for FARF is raised through entrance fees and auction items. Auctions take place at the race location. The winner of the 5K is honored after the event, and so is the person who crosses the finish line last.
Anderson said the families hosting the event run the race too.
“I ran one year in a Batman mask,” Anderson said. “It was really sweaty so I had to take it off during the race. One of the best costumes is The Incredibles. That’s a good one to run in.”
Anyone interested in running the race can sign-up online at farf5k.com. Families can also register the day of the event.
Each year the two families raise about $20,000 for FARF. Other fundraisers raise nearly millions of dollars, which Anderson says the group may be able to reach one day. This year’s goal is $25,000. So far the group has raised $10,400 through donations alone.
But for these families, it’s less about the money and more about seeing their children enjoy a day with a large group of local heroes.
“They don’t realize how different they are yet,” Anderson said. “It’s just great seeing them get to be kids.”
WANT TO BE A HERO TOO?
Anyone interested in raising money for FARF can join the 2019 FARF 5K Superhero Run this Labor Day weekend. “Experience the beauty of the Pacific Northwest on our new 2019 FARF 5K course at Lake Wilderness in Maple Valley,” the FARF 5K website states. “Run alongside the shores of scenic Lake Wilderness and through beautiful, forested scenery on wide and well maintained trails. If you’re lucky, you might even catch a glimpse of Mount Rainier. You won’t want to miss a single step of this course.” The event is begins at 9 a.m. on Monday, Sept. 2 at Lake Wilderness, 22500 SE 248th St. in Maple Valley. No pets are allowed at the fun run. Everyone is encouraged to come dressed up in their favorite superhero costume. Blake, Issac and Avery will be at the event with their parents to run and cheer on their supporters.