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Teddy Reiff's Fundraiser

THG1L Mitochondrial Research at CHOC

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THG1L Mitochondrial Research at CHOC

Teddy was diagnosed with an extremely rare mitochondrial disease involving two separate genetic mutations of the THG1L gene. These variants to Teddy’s gene cause mitochondrial dysfunction impacting his ability to produce and transfer energy to his cells. This in turn causes many conditions he must contend with daily including refractory epilepsy, development delays, and hypotonia. Of the five known diagnoses over the last two decades, Teddy is one of two people still alive with this disease today.

At three months old Teddy suffered his first seizure. He was quickly diagnosed with epilepsy and put on medication to control his seizures. Over the course of the next few months Teddy would be in and out of the hospital working on seizure control. In early January 2024, Teddy had a prolonged seizure at home causing him to stop breathing and require resuscitation. A few days later while inpatient, he suffered from additional events where he stopped breathing causing cardiac arrest. These events lead to the difficult decision to keep Teddy intubated and eventually move forward with a tracheostomy. This secured his airway and limited potential life-threatening incidents from recurring.

During this time, due to the complexity of Teddy’s illness, a full genome sequence was recommended by the hospital. The availability of this test was relatively new and once returned was able to provide a diagnosis of Teddy’s disease resulting from the mutation of the THG1L gene. Though bleak in outcome, the hospital and Teddy’s family continued to fight for the best possible result. Teddy’s doctors implemented a strict Ketogenic Diet and mitochondrial supportive vitamins to support mitochondrial function. In April 2024 he was approved to receive a Vagus Nerve Stimulator to help with seizure control. Since this surgery, he hasn't had any recurrence of life-threatening seizures. Thankfully Teddy was able to return home in May 2024. Since returning home Teddy’s family has committed themselves to fighting this disease. In addition to his doctors at CHOC, Teddy sees a wide variety of specialists including a neuro pediatric chiropractor, physical therapist, occupational therapist, craniosacral therapist, and early intervention teachers.

CHOC Metabolic Research Lab continues to do research on Teddy’s disease and other rare Mitochondrial Diseases. With donations in Teddy’s name the research team will be able secure time and funding to focus on THG1L research.

Teddy's family continues to push for his best possible outcome, but with little to no research done on Teddy’s specific diagnosis, no clear treatment is available and the possibility of a cure is limited.

-Note from Teddy's Parents, Cassie & John Reiff-
Thank you so much for your interest in Teddy’s story. If you’re lucky enough to know Teddy, you would see immediately the bravery and determination he meets every moment with. Despite all the daily challenges, he meets them with a smile. We are asking for your donation in honor of Teddy’s bravery to go toward research at Children’s Hospital of Orange County’s Metabolic Research Lab. We have set a goal of $50,000 which will help fund a year's worth of research on Teddy's diagnosis. This will directly impact Teddy’s life and other’s struggling with rare Mitochondrial Diseases.

Please help support us on our mission to find treatments and a cure for rare Mitochondrial Diseases.

Follow along with Teddy’s journey on Instagram @teamsuperteddy

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All donations are tax-deductible directly via the CHOC foundation. Receipts will be mailed/emailed accordingly.

JUL
9

Exciting Progress!

Thanks to your incredible support, the CHOC Metabolic Research Lab is officially moving into the next phase of THG1L research. They will begin testing various therapies on Teddy’s cells to explore treatments that could improve mitochondrial function and help fight his ultra-rare disease.

This research is a critical step forward—and it’s happening because of you.

We are now just $8,500 away from our $50,000 goal! Every contribution gets us closer to potential breakthroughs for Teddy and other children affected by THG1L-related disorders.

If you haven’t yet donated—or would like to help us finish strong—we’d be so grateful. Thank you for being part of this journey with us and please continue to follow along on Instagram @teamsuperteddy

With heartfelt thanks,
Cassie & John Reiff

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