Blake Robison at Seattle Children Hospital. Submitted photo from Emily Robison

Blake Robison at Seattle Children Hospital. Submitted photo from Emily Robison

Super gig for a mini super hero

Blake Robison has a rare genetic disease that affects about 31 kids per year, according to his mom, Emily Robison.

Most 6-year-olds don’t have to worry about cancer, bone marrow transplants or multiple hospital visits that cause them to miss school. One little boy in Maple Valley is going through all of this and then some, and is still staying positive while living life to the fullest.

Blake Robison, a kindergartner at Glacier Park Elementary School, has a rare disease called Fanconi Anemia. According to his mom, Emily Robison, this is a rare genetic disease that affects about 31 children per year.

“So it can affect blood and usually leaves kids in bone marrow failure, but it can also affect all the systems of the body and leave some kids with different deformities in their hands and in different systems of the body like kidney issues and stuff like that,” Emily said.

Blake currently has severe bone marrow failure.

He is scheduled to have a bone marrow transplant next week at Seattle Children’s Hospital.

Emily said Blake was born with an extra thumb and that is what led them to figuring out he had Fanconi Anemia.

“He was actually having surgery at Seattle Children’s to remove his extra thumb when he was about a year and the doctor’s there just kind of looked at him — he also has a little bit of hearing loss as well — so they looked at his extra thumb and his hearing loss and said ‘I think you need to go to a geneticist to make sure there’s nothing connected here,’” Emily said. “We were actually living in Alaska at the time so we traveled to Seattle for the surgery and we met with the geneticist and then we went back home to Alaska and they were running tests, some that we didn’t even know about, and they called us when we were back in Alaska and told us Blake had Fanconi Anemia. They kind of found that needle in a haystack almost because it’s really rare and a lot of doctors don’t really know what Fanconi Anemia is. It was pretty remarkable that they diagnosed him so early with just a few signs.”

Two weeks before Blake’s diagnosis his dad got a job offer in the Seattle area as an accountant for Lakeside Industries in Issaquah. Emily said it was really fortunate because they needed to be closer to doctors. She went onto say that Seattle Children’s is fantastic said she and her family are really fortunate to be able to move to the area.

Once Blake’s transplant has taken place, Emily said his recovery will take about one year. She said he will start chemo next week — the week of May 13 — and then he will be on an assortment of chemo drugs, which will eventually lead up to his actual bone marrow transplant and then will be in the hospital for about four to six weeks.

“So hopefully after transplant he should be feeling much better, his quality of life will be so much better than it is now. Right now he gets really tired easily, he bruises easily and because of low platelets he also bleeds more than normal. So after the transplant hopefully he’ll be feeling really good and be back in school and be able to participate in more things that just a normal six or 7-year-old would do,” she said.

Blake received his bone marrow transplant off of a bone marrow registry, so he and his family have no idea who the person is that donated the bone marrow.

Once the long four to six weeks are over, Blake will be discharged and then be put into isolation and on medication for a year, which means he will be out of school for one year.

With the medication that Blake is on, he has an increased risk of cancer at a young age.

“Fanconi Anemia already gives him an increased risk of cancer at a younger age, but putting on a bone marrow transplant and chemo on top of that, it heightens his risk that he already has, so we will still be monitored by a team of doctors, looking for signs of early cancer and just monitoring, but this is our first big step in making him feel better. He won’t be cured, but he will hopefully feel better and be more of a normal 7-year-old,” Emily said.

Since Blake will be out of school for the next year, his classmates and teachers found a way to make it feel like he is still in class.

“His school has been so great. They have this stuffed monkey that they’re putting in his chair in his kindergarten class to kind of hold his place so Blake is there in spirit,” Emily said.

The school also threw him a going away party that involved the whole school. Emily said Blake felt like a celebrity.

“He said that he was famous because there were these people that he didn’t even know and they know who he was, so that makes him famous,” she said.

Currently, Blake is really into super heroes. Emily said his favorite right now is Spiderman, but he also really likes Batman, so he tends to go back and fourth with is favorite.

In honor of his love for super heroes, the theme of his going away party was super hero themed.

“They had a party for his class that was like this Spiderman party, it was decorated amazingly. They had little goodie bags for his whole class and with a super hero dress up station where they got to play,” Emily said. “After the party we walked outside and the whole school was out waiting to say goodbye and they were all chanting his name and waving and we had some super heroes there, quite a few — like Superman, Batman Captain America, Iron Man — they were all there to cheer Blake on, it was really awesome.”

The Robison family has made a YouCaring fundraiser account to raise money for some of Blake’s medical expenses and other necessities for the family while Blake is in recovery. So far they have raised $8,685 of their $10,000 goal.

“We have been blown away by the generosity of our community, our family, our friends, it’s awesome, it’s amazing, it’s really humbling actually to see that number rise. And just from people we know and people who we don’t even have any clue who they are, were donating to us, it’s really humbling and we feel really, really blessed,” Emily said.

She went onto say, “He’s (Blake) an amazing kid. (He’s) been through so much more than any adults really — more pokes and prods — his attitude is amazing for a 6-year-old.”

To follow along with Blake’s journey go to his Facebook group at www.facebook.com/groups/blakesfajourney.

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