SMA Type 1 is the “Storm”
Oh boy does MJ Purk “Dance in the Rain”
MJ says she has SMA Type1 “Plus” because she is certainly stronger than many SMA Type1 kiddos. We proudly call her Queen because she is stronger in spirit than most human beings.
In the world of SMA we celebrate monthly birthdays…MJ turns 295 months old Today!!!!
MJ’s sister Emma was also affected by SMA but sadly lost her battle in 1992.
MJ is forever engaged to Logan Harman. When she had her trach surgery, medical complications kept her in the hospital for 79 days. Logan and his mom Shelle sent the picture below and MJ responded YES! making them officially engaged.
Unfortunately Logan passed away two months later.
Every Super Hero needs a sidekick and MJ’s is Brenda
Brenda has been MJ’s caregiver and friend since 1991. Together, they attempt to “Dance in the Rain” every day. That is not always easy but they succeed more times than not. MJ and Brenda make a great duo, each of them possessing an amazing personality. Brenda began quilting blankets for MJ several years ago and before long they had way more than MJ could ever use. They decided to start sending their “Blanket Hugs” (free of charge) to their buddies around the world who were also living with SMA. In 2004 they founded Blankets For SMA
Click the logo to visit their site.
To date they have sent 1025 blanket hugs!!
She finds a way to dance in so many situations. When in the hospital she has funny faces on her masks. NONE of her socks match (EVER). She gets out and sees things, she stays in and does videos for SMA kids and their families. She is constantly thinking of the SMA kids and families. She has many many friends but Leah and Roman are very dear to her heart.
While MJ could simply wait for the disease to take its course, she could “wait for the storm to pass” she recognizes that she has too much living to do, so she “dances”. She dances in the rain of the storm know as Spinal Muscular Atrophy.
She has outlived the prognosis of the disease by 22 years but the point of this is not to show how long she has been alive, but rather that she has truly LIVED those years.
We Love You MJ