Coronavirus (COVID-19): Important Information From Tri-City Medical Center Learn more

Supporting Families of Children With Rare Diseases and Life-Threatening Conditions

Supporting Families of Children With Rare Diseases and Life-Threatening Conditions

February 28 is Rare Disease Day – a day dedicated to raising awareness for the estimated one in 10, or 30 million Americans living with a rare disease, 50% of which are children, who face significant quality-of-life issues. For example, people who have rare diseases incur medical costs that are three to five times higher than people with non-rare diseases, they may be unable to work and require a caregiver, and they may have special education and transportation needs. Additionally, it may take them up to five years or more to receive a diagnosis and some conditions go undiagnosed.

Such was the case with Mitchell Thorp who courageously battled an undiagnosed illness from age 13 to 18; during this time, he was unable to walk or talk and struggled with constant, unmanageable pain. Having lived through this five-year diagnostic odyssey with their son, Mitchell’s parents understood the challenges that parents faced and formed the Mitchell Thorp Foundation.

“Since 2009, we have been supporting families whose children suffer from life-threatening illnesses, diseases and disorders by providing financial, emotional and resource support during this desperate situation,” said Beth Thorp, Executive Director and Co-Founder. “We do this through our four programs, which are tailored to meet the needs of each eligible patient. In 2021, we saw a 45% increase in the number of children and families we have assisted, many of whom are below the poverty line. We are forever grateful to Tri-City Medical Center (TCMC) for their support of our services.”

Through its annual grant, TCMC aids families who utilize the Foundation’s programs: Medical and Home Assistance, Healing and Rehabilitation and Conversion Vans. Under the Medical and Home Assistance program, families receive financial support for medical treatments and equipment not covered by insurance, as well as assistance for transportation and hotel stays, and rent/mortgage, utilities, groceries and home improvements for mobility. The Healing and Rehabilitation program offers physical therapy and neuro motor integration services, integrative medicine and therapy services, educational sessions and personal self-care services, and counseling. The Conversion Van program helps families purchase wheelchair accessible vehicles, which are a necessity to ensure the safety and mobility of their child.

“Our goal is to create as much normalcy in the home environment as possible,” said Ms. Thorp. “The stress from this situation will test families beyond their endurance, bankrupting them financially, emotionally and physically, which often leads to divorce or separation. We know that making a difference today for a child who is fighting for their tomorrow, will transform their lives. Tri-City cares about the health and wellbeing of these patients in our community and is a terrific resource for them.” 

“It’s now been more than four years since we formed this partnership and we are happy to provide financial support for the Foundation’s programs,” said Aaron Byzak, Chief External Affairs Officer at TCMC. “Their ongoing efforts to help patients and families in times of crisis, regardless if they have a rare disease, cancer or undiagnosed illnesses, is incredible. As a parent of a child with a rare disease, I know how important this is because we all just want our kids to be healthy and happy.

I’m also impressed with their Youth Leadership Council, which is designed to teach young adults the importance of community service,” added Mr. Byzak. “I’ve had the privilege to speak to the teens participating in this program, which provides them with an opportunity to volunteer, learn how to run a non-profit and develop servant leadership skills, and I have seen the difference it makes.”

“Tri-City Medical Center has been a part of the North County community for more than 60 years and our partnership with the Mitchell Thorp Foundation is just one example of our COASTAL Commitment – our mission-driven initiative to advance the health and wellness of the community we serve, ”said Mr. Byzak.

To learn more, visit Tri-City Medical Center’s COASTAL Commitment page and the Mitchel Thorp Foundation.

To learn more about the services offered at Tri-City Medical Center, call 855-222-8262 to be referred to a Tri-City physician.