New Family Compassion Fund created by West Linn charity
Years ago, before Internet message boards and Facebook could connect families across the world, Teryn Suhr met a kindred spirit at a pizza parlor in Clackamas a fellow mother whose child also suffered from the rare and terminal genetic disease metachromatic leukodystrophy, or MLD.
The two mothers could practically complete each others sentences, and Suhr remembered feeling as if she was instantly connected to the woman in a binding way. It was a cathartic and impactful experience as Suhr and her husband, Dean, worked to navigate a new reality after two of their daughters, Lindy and Darcee, were diagnosed with MLD in 1995.
The meeting also helped inspire the Suhrs to create the MLD Foundation shortly thereafter. Thirteen years after the foundation officially became a registered 501(c)(3) charity in 2001, Teryn Suhr announced the creation of a new Family Compassion Fund Jan. 23, intended to provide funding to enhance the quality of life for children, teens and adults suffering from MLD.
Were hoping we can now help some families with needs, Suhr said. These families have a lot of needs, which at times insurance doesnt cover. Or they dont have insurance, or theres a significant co-pay for treatment.
MLD causes the degeneration of white matter in the brain and the central nervous system. A missing enzyme in the bloodstream breaks communication between the nerves and the brain, ultimately resulting in loss of acquired functions, paralysis, seizures, blindness and eventually death.
There is no cure for MLD, and treatments like bone marrow or stem cell transplants are generally effective only for patients who have yet to show significant symptoms of the disease.
More than 50 percent of MLD patients are between the ages of 12 and 18 months, with a life expectancy of just five to seven years.
Were hoping some day theres a cure, or at least a treatment for this disease, Suhr said.
For now, Suhr created the Family Compassion Fund as a way to help families cope with MLD and stay afloat financially.
It could be to go see a specialist, Suhr said. Or help with a co-pay on insurance. Really this is kind of new ground for us we know the need is bigger than we can meet, but its something.
Though the foundation has grown considerably over the years, Suhr still refers to it as a very small charity run solely by herself and Dean Suhr. They have no paid staff, and rely heavily on donations to keep the foundation growing.
What made the Family Compassion Fund possible was a new partnership with the Texas-based Believing for Bryleigh Foundation. Corbin and Kaprice Shullanberger saw their 2-year-old daughter, Bryleigh, diagnosed with MLD back in April 2013, and a group of their friends quickly organized a Believing for Bryleigh fundraiser.
The fundraiser grew into what the Shullanbergers called a major event, prompting the family to create the official Believing for Bryleigh Foundation. When the Suhrs and Shullanbergers met, they agreed to create the Family Compassion Fund. Thats what enabled us, Suhr said. They had the ability to do fundraising, and we had the mechanisms in place to be able to pull people together.
Families in need can apply for grants from the compassion fund. For tax purposes, the majority of the funding will go to third-party treatment vendors rather than families.
A committee of five representatives from various organizations, including the MLD Foundation, will review the compassion fund grant applications.
The compassion fund is particularly meaningful for the Suhrs, who have seen all sides of the disease. Their oldest daughter, Lindy, has outlived every expectation placed upon her and is now 33 years old. Darcee Suhr died from the disease in 1995, just before the Suhrs created the MLD Foundation. Their middle daughter, Jclynn, was never diagnosed.
You find out a child is going to die in a matter of years, and its devastating, Suhr said. (The compassion fund) has been a dream of ours for at least 10 years, as weve gotten to know families and see their struggles. Theres so much more we want to do, but we can only do so much.
To face this disease alone is beyond what anyone should have to bear.
Add a comment