Heidi Hutton

💙 A bit of background on Tyson’s journey 💙

In late 2023, Tyson Hutton, a vibrant and energetic 9-year-old boy, was diagnosed with Mitochondrial Neurogastrointestinal Encephalopathy (MNGIE) Disease. MNGIE is an extremely rare genetic disorder that affects multiple systems within the body. For Tyson, this included difficulty absorbing sufficient nutrients and gaining weight, as well as deteriorating muscle tone in his legs, requiring the use of Ankle and Foot Orthotics (AFOs) to help reduce falls and injuries.

Due to the rarity of MNGIE and the limited research and expertise surrounding its treatment, Tyson underwent extensive testing, multiple trips to The Children’s Hospital at Westmead in Sydney and international consultations with specialist doctors.

Following extensive consultation, Tyson’s specialist team determined that a bone marrow transplant offered him the best treatment option. Tyson’s younger sister, Rose, was genetically tested and found to be a suitable match, allowing her to become his bone marrow donor.

Tyson has since undergone his bone marrow transplant and is now doing well. 💙 His journey has involved countless appointments, procedures, hospital stays and challenges, and we are incredibly grateful for how far he has come.

Because MNGIE is a genetic disorder, Jeans for Genes is a cause that is particularly close to our hearts. This August, we have decided to take part in the August Skipping Challenge for Jeans for Genes, helping raise funds and awareness for children and families affected by genetic conditions.

For us, this challenge is personal. We know firsthand how much research, medical advances and support can mean to a child living with a rare genetic disorder. Every skip and every dollar raised helps support research that can give children like Tyson hope for a brighter future. 💙