Mason's Story: Living with a rare disorder

My nephew Jared and his wife, Alicia are the parents of 7 year-old Mason Galambos, who is living with Allan-Herndon-Dudley syndrome (AHDS), an extremely rare genetic disorder also known as MCT8 deficiency .

Jared and Alicia’s entire world came crashing down with Mason’s rare diagnosis. Caring for Mason is now an exhausting 24 hour-a-day job for his parents and comes at great monetary expense.

Children with AHDS struggle to support their heads. They are affected by a loss of muscle tone, developmental delays and subsequent health complications. As Mason grows, he experiences debilitating muscle spams and epileptic seizures, and was recently fitted with a feeding tube because he has difficulty swallowing.

AHDS diagnosis is one of those few moments in life that shapes someone’s future. Jared and Alicia had two options in front of them - accept the situation as hopeless and give up, or fight for Mason’s life, however long and difficult that road might be.

As time goes by, Mason will require ongoing surgeries and medical equipment which are not entirely covered by insurance. Over the past couple of years we have raised over $90,000 to make the the family home safer, and more accessible. Within the next year the family will need to purchase a wheelchair vehicle, as Mason grows too big to be lifted and transported by his parents.

Our family and friends provide as much help and financial assistance as we can, but it is now beyond our capability to support Mason’s needs on our own. Your generous donation will help Jared and Alicia afford Mason’s medical, surgical and mobility needs.

Thank you so much!

Kathy Jackson

Brighton, ON