When we first shared the Moothart family’s story two years ago, they faced the unimaginable: having two children, Thomas and Josiah, severely affected by ME/CFS at the same time. The bright futures they once envisioned seemed to fade away, replaced by the daily struggle with debilitating symptoms.
At that time, Thomas had difficulty expressing his needs to anyone outside of his immediate family, often requiring his mother, Emily, to communicate on his behalf with doctors. Josiah, a vibrant achiever, had become bedridden within months.
Today, amidst ongoing challenges, a glimmer of hope shines through;
“You can be in the deepest, darkest place, where every story of hope feels like it hurts more than it helps. But you must hold on because tomorrow could bring a life you never imagined. It’s worth having hope, even when it feels impossible,” Emily emphasizes.
Fast forward to today, the boys are making meaningful progress in ways that Emily once dared not dream of. Both boys are now in their second year of a hybrid online high school, a setup that accommodates their unique needs. “Neither boy would be able to function in a normal school environment,” Emily explains. “We’re thrilled they have an academic support system that works with what they can do.”
The Progress Extends Beyond Academics
Thomas, age 17.5, who struggled to communicate reliably just two years ago, now navigates the bus system independently and even ventured out to a comic convention. With the help of weekly fluid infusions and a proactive healthcare team, he is exploring activities that once seemed impossible, like biking and jogging on the beach. Now, he’s cautiously trying new things, learning to embrace life with an awareness of his boundaries. As Emily notes, “He knows his limits, but he’s also learning to live again.”
Josiah, age 16, has found joy in rock climbing, an activity that accommodates his unique challenges related to Ehlers-Danlos syndrome. Under the guidance of a skilled occupational therapist, he discovered the empowerment of climbing—an activity that promotes strength without the strain of traditional sports. Josiah has also been volunteering with an animal welfare society, walking dogs—a far cry from the wheelchair he used when he first started.
Emily remains grounded in the reality that ME/CFS can be an unpredictable rollercoaster. She knows that setbacks are possible, but for now, she is focused on the present—on the progress her sons have made and the quality of life they are starting to reclaim. “I don’t fully understand how these improvements happened, and I don’t take it for granted at all,” she admits. “I know it can change, and we could move backward in the future. But maybe it won’t happen. At this moment, we’re enjoying where we are.”
While the boys are no longer bedbound, they continue to manage a complex array of symptoms that require constant attention. Their journey is filled with challenges, but they are gradually carving out a new reality for themselves.
The journey is far from over, but today, they are living lives they never imagined possible just a few years ago. And that, Emily believes, is the greatest victory of all.
Open Medicine Foundation (OMF) stands unwaveringly with Mootharts and many others, ensuring that their stories drive our commitment to finding scientific answers. Our Triple Giving November campaign is about more than raising funds – it’s about championing a future where chronic illnesses no longer stop vibrant lives.
Until December 3, 2024, EVERY dollar you give to OMF will be TRIPLED, up to $500,000.
OMF also accepts gifts of stock, cryptocurrency, real estate and retirement assets.
Learn more today!
