(Photo by Rogue Heart Media)
Two years ago, Mary and Jay McDirmid were happily anticipating a new baby to join their two-year-old daughter, Charlie.
Then came a shock.
Their baby was diagnosed in utero with Tuberous Sclerosis Complex (TSC), a rare genetic disorder that causes tumors to form in many different organs, primarily in the brain, heart, kidneys, skin and lungs. There is no known cure for TSC. It most strongly impacts quality of life from brain tumors that can cause seizures, developmental delay, intellectual disability and autism.
Ruth was born with a tumor on her heart and has since developed tumors on her brain. Seizures, specifically infantile spasms, are a by-product of the disorder. Doctors expect she will next develop tumors on her kidneys.
In her first two years, Ruth has had at least 80 doctor appointments. That does not include all of the appointments for scans, blood draws, or to see other types of health professionals. Ruth’s tumors are not cancerous, and depending on the placement of the tumor, can be removed surgically or shrunk via medication.
Advocating for Ruth, which has taken on the name #adventureruthie, became a second job for Mary, who is a full-time financial adviser. “We instantly became ‘super users’ of the health care system,” says Mary. “As someone who knows what’s good about the services, where things can improve and what’s missing in the system, I believe it’s important for me to be visible and to share what I have learned” – which is how Mary became a regular participant of meetings for VISION 2030.
Vision 2030 is an initiative, led on behalf of the community by Greater Spokane Incorporated (GSI), focusing on growing and expanding the Life Sciences industry in our region. This effort encompasses expanded undergraduate and graduate medical and health sciences education, health and life sciences research commercialization and business development, and community health care.
Research shows that the Life Sciences sector has the greatest economic growth potential for our region – with estimates of an annual impact of up to a 9% increase in GDP and more than 9,000 high wage jobs by 2030. To make the Life Sciences Spokane goals a reality, 103 volunteers, across 40 organizations, serving on 10 committees are providing their very valuable strategic expertise.
The creation of two 4-year medical schools and co-locating university programs for many health sciences and allied health care professions in the University District has, in turn, served as the catalyst for attracting clinical research and biomedical companies to the area.
“Spokane is growing a wonderful health care resource, and we have made great strides in creating a medical hub by adding medical residency programs and schools focused on the health sector,” says Mary. “But when it comes to research and a greater depth of specialty care, there’s much more Spokane can add.”
While Mary understands and appreciates the positive economic impact of growing the Life Sciences sector, she is more focused on how it will help individuals facing daunting health challenges.
“Our family has had to make many trips to Seattle for Ruth’s care. It’s expensive, exhausting and hard on a family with two young children. There is a large group of people in our area with needs for very specialized care. We don’t want them to move or to have to make repeated trips to other cities to receive care that we have the potential to provide in Spokane.”
“I am passionate about Spokane and want to keep our family here,” says Mary. “Achieving the goals of Vision 2030 will help not just families like ours, but the entire region – creating jobs with higher than average wages which in turn helps all sectors of our economy.”
Read more about what VISION 2030 has accomplished so far and where we are headed next: Life Sciences Spokane
Learn more about VISION 2030 at Greaterspokane.org/vision-2030.
Written by Debbie Rauen, Legendary Hills Communications