For a decade now, the Davison family has been passionately involved in the Metropolitan Seattle Sickle Cell Task Force, whose mission is to support families and individuals who were born with sickle cell disease.
“We kind of jumped in, and we take a family approach to most things, and so when we’re jumping in, we all jump in, so the kids have been a part of it every year,” said mom Foxy Davison, a community coordinator for the task force.
Team Davison, with Foxy leading the way and dad the grill master Jason doing the heavy lifting, make a formidable force for a good reason.
“The Sickle Cell Walk, it's to help promote awareness and to generate support for the children for them to be able to go onto the annual camp in other ways that the funding can help,” Jason explained.
If you’re asking yourself, what is sickle cell disease? Unfortunately, you might be in the majority.
Dr. Michael Bender, director of the sickle cell clinic at the Odessa Brown Children’s Clinic, is the go-to-guy for all things sickle cell.
“Sickle cell is a genetic disease that you're born with, and most people have it for life. It affects the hemoglobin in red blood cells, and under certain stresses, the hemoglobin forms crystals that change the shape of the cell, and so they get stuck in any blood vessel in the body blocking blood flow,” explains Dr. Bender.
The Davison’s have three children. Ten-year-old daughter Zion escaped the disease, but 12-year-old Judah and five-year-old Trinity have sickle cell. If you ask them what it feels like when they have a painful episode, words like hurt seem inadequate.
“A six-year-old patient of ours once told me that it feels like a crocodile biting me and it won't stop biting me. It's this bone-crushing throbbing, aching grinding pain,” said Dr. Bender.
And when that happens, it affects the entire family.
“Every time a pain episode hits I would say it puts us in a hole. We go in a hole for a while and sometimes we can come out of that hole in a few days. We know how to come out of a whole a little more efficiently, how to rely on each other differently, but nonetheless, every time it shows up it's another hole,” said Foxy.
The Davison’s rely on each other for support and compassion. That’s one of the reasons the Task Force and annual walk mean so much to them. It’s a way to let others know that there is help available and you can learn to overcome what may seem like an overwhelming hurdle.
“The walk is really a big party, and that's the fun part it's the celebration of life of people who are living with this condition, people who have been impacted by it, and we're just one of the amazing families. There are some amazing families who are doing some amazing work and trying to educate themselves and their families and working with their providers to figure out ways to manage it,” said Foxy.
“So, this is a reason to come to the walk. A lot of people have heard about sickle cell disease in the distant past and learn something in school, but they don't know the real deal they don't know that there are great treatments a lot of people know that it's devastating, but there are great cures and treatments for it,” said Dr. Bender.
Simple things like drinking enough fluids, ibuprofen, being active, and deep breathing. Dr. Bender says for many who are unable to control the pain by themselves, seeking support, becoming part of the community can help you find a better quality to your life.
“I think suffering creates resilience and really, it's my children that are immensely strong my son and both my daughters just show a lot of resilience and so it inspires me to be strong,” tells father Jason.
Everyone agrees that Sickle Cell Disease has gone underfunded for far too many years.
The reasons for that are many, but it’s hard to dispute that a disease that mainly affects black or Hispanic populations has gotten less respect and awareness than illnesses that harm others.
Dr. Bender and the Davison’s tells us even so; there are new therapies on the horizon and under the right circumstances, even a cure.
For more information explore the Seattle Children’s Sickle Cell Program website. For details about participating in the Sickle Cell Walk, visit the Metropolitan Seattle Sickle Cell Taskforce website.