Help Mackenzie get his Dreams Back

Hi, this Gofundme page is for a special young man who has touched not only my life but also many people's lives whether it be with his smile, warm hugs, laughter or just loving personality.

Who is this amazing young man? Read on to learn more about his story.

Mackenzie is a 25 years old young adult with Down Syndrome who is a joy to all who know him. He has always been very engaged in life, active in church and school, and interacting actively with family.

Mackenzie was gaining many of the life skills needed to be more independent with dreams of working in a meaningful job. He was a cook assistant in a busy high school cafeteria and had a list of future plans and dreams.

He graduated from St. Mary’s High School where he enjoyed a rich program that was partially integrated.

In 2019, Mackenzie experienced a sudden decrease in his ability to do the things he enjoys. He exhibited a marked decline in independence and reasoning skills. He became anxious and had emotional outbursts.

He describes this as ‘felling stuck in the back of my head”. His speech and cognitive skills declined, and his personality changed. Recently he stated that ‘his words are not worth knowing’, since his thought get muddled and he is frustrated with his inability to express his thoughts and ideas well.

We started on a long medical journey to find the answer to this change in hopes he would be able to regain function and personality. All medical tests and diagnoses came back negative, and we were left to wonder if there would ever be an answer.

In August 2022 we viewed a podcast about regression in adults with Down Syndrome. The physician described Down Syndrome Regression Disorder and the list of symptoms described Mackenzie completely.

This disorder was newly named and not well understood. One of the physicians treating the largest number of patients agreed to consult with us about Mackenzie. This was our first connection to Dr. Santoro of Children’s Hospital LA. He was committed to helping Mackenzie, having seen promising results treating other young adults suffering the same regression.

The clinical trial we will participate in will be for 3 months at the Children’s Hospital of Los Angeles. It is the first clinical trial for this disorder. The diagnosis and treatment will happen at that time.

There is no ‘placebo’ group in this trial, so we are assured that Mackenzie will receive effective treatment while there.

We have been unsuccessful in our attempts to obtain diagnosis and treatment in Ontario as there are no specialists in this disorder here as yet.

We hope that after this study is complete, the disorder will be recognized by doctors in Canada as well so that many others can access Canadian treatment in the future.

All donations will be accepted by Gordon Wright, Mackenzie's Dad.

If you would like to know about this treatment please go to the link below.

https://www.chla.org/blog/physicians-and-clinicians/first-clinical-trial-down-syndrome-regression-disorder