Acceptance Love & Leadership Inc

Funeral services for sweet Mary Mitchell.

“I am a rainbow” ~Dolly Parton

On February 12, 2019, The Stewart family received a phone call from the geneticist with the news that Mary Mitchell has MPSIIIA- a disease with no cure, no treatment, and affects life expectancy. This disease, also known as Sanfilippo, is often called children’s Alzheimer’s.  

On April 26, 2019, Mary Mitchell became the second child in the world to participate in a clinical trial called Lysogene, based out of France.  Lysogene is gene therapy done through brain surgery.

The first few months after surgery, her family saw so much improvement. However, over the last 18 months, they watched their little girl progress further into the disease, losing most of the skills she once had.

Over the last year, we had the joy of getting to know Mary Mitchell and her fun personality. She loved walks outdoors, music and being with her friends at the center. Mary Mitchell was a fighter and her family did everything to support her. They are truly an inspiration to everyone that knows them. Our sweet Mary Mitchell passed away October 11th at the age of 5.

Mary Mitchell brought so much joy to the lives of everyone around her. Her smile and love for Dolly Parton will be with us forever. She taught us to cherish each moment and appreciate the happy times or the “rainbows” in life.
We will miss her so much❤️

Want to join me in making a difference?

Acceptance Love & Leadership Inc,  is raising funds to help Mary Mitchell with purchasing specialized therapy equipment for her and her therapy buddies and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to us.

On February 12, 2019, The Stewart family received a phone call from the geneticist with the news that Mary Mitchell has MPSIIIA- a disease with no cure, no treatment, that affects life expectancy, she would eventually lose all skills she had learned thus far. This disease, also known as Sanfilippo, is often called children’s Alzheimer’s.  

On April 26, 2019, Mary Mitchell became second child in the world to participate in a clinical trial called Lysogene, based out of France. Lysogene is gene therapy done through brain surgery.

The first few months after surgery, we saw so much improvement. However, over the last 6 months, we have watched our little girl progress further into the disease, losing most of the skills she once had. She can no longer feed herself, talk, or understand most of what is said to her.

Sanfilippo is so rare that there are only around 3,000 diagnosed cases world-wide. The life expectancy is different for each child as the disease progresses different for each child affected. In the last year since Mary Mitchell’s diagnosis, we have learned of around 10 children who have died, most of them under the age of 10.

 The daily life of caring for a child with this disease is often too much for almost anyone to handle on their own. Mary Mitchell requires full-time eyes & hands on her. She cannot be left unattended for even a few seconds. She puts everything in her mouth-rocks, mulch, dog food, etc. The disease manifests itself in a way that causes her to be extremely hyperactive, very impulsive, & have zero sense of danger. 
 
As difficult as it is to see our little girl slip each day, we are very grateful that she is content & happy. We recognize that each day is a gift. We treasure time with her.  Mary Mitchell is a gift who has and continues to teach us so much.
 
Despite being faced with our worst nightmare, we know Mary Mitchell is a true gift. She lives life without expectations of anything or anyone.  Her life is so simple but full of love & joy.

Her family has decided to be Mary Mitchell's voice  and share her story on Instagram @Hopeforshug.