Our Family Story:

We are Andy and Molly West, living in Maplewood, MN, with our two sons, Malachi (Kai) (16) and Asher (13). Our son, Malachi, was diagnosed with Muscular Dystrophy in February 2018, at the age of 7.5 years old. An official diagnosis of Duchenne Muscular Dystrophy came after a muscle biopsy surgery in Oct 2018. Our younger son Asher, at age 7, was also diagnosed with Duchenne (DMD) via a genetic saliva test. There is no family history of this disease on either side with DMD. This was a devastating discovery! Duchenne is a muscle wasting disease that you can read more about here:

About Duchenne - Jett Foundation

Prognosis:

Both Kai and Asher will lose the ability to walk eventually. Kai is not able to walk any more due to the disease. He stopped walking at age 12 1/2. He is not able to stand up independently, nor stand. He needs a wheelchair to move around. He has an electric wheelchair now for school bus rides and getting around the highschool.

Asher is getting tired after longer walks and has an electric wheelchair we bought. He can still walk and get around.

They will lose the function of their legs and possibly arms. The lung and cardiac muscle strength are eventually also altered. We have pulmonary functioning tests every 6 months, EKG’s, Echo’s. We need physical therapy weekly, and stretching daily to help keep contractures from forming, and to keep up strength.

To be able to stay in our home, we need help completing home modifications to make the home accessible for the boys. We are planning future needs. We have TRULY been enjoying family outings together now that we have our van!

What we are funding for: (✓marks things completed!)

 Replace carpeting with functional flooring for wheelchairs ✓

Make a fully accessible bathroom ✓

Widen door frames in bedroom and bathroom doors ✓

Ceiling lift in the home to transfer the boys ✓

A Stair lift chair system for boys getting downstairs. 

Family Accessible Vehicle: UPDATE! We were able to purchase a family accessible vehicle WITH ALL OF YOUR HELP!  12/2024. To fit two wheelchair users, we opted for a Ford Transit 150. It has totally changed our whole world. The anxiety I had each morning that he would miss the bus and not be able to get to school, or medical appointments was unbearing for me. The dread and angst if he got sick at school was worse. I am beyond thankful to be able to take care of my boys and drive them anywhere. 

We need help to get our boys out into the world to live the best life there is for them.  Thank you for reading this and getting to know our family and needs. We appreciate your help.

Sincerely, Andy and Molly West, Kai, and Asher.