Battling Back Against SMA
PHS Walks and Rolls with the SMA Crew
Clockwise from top left: PHS RT John with PHS patient and mom, PHS Hourly Nurse Laura (walking for team Braylin) and her son, PHS RT John dancing at the cake walk, PHS RT John manning the booth and ready to answer any question that comes his way.
PHS was excited to be able to participate in the 12th Annual Families of Spinal Muscular Atrophy Walk and Roll event on Saturday September 15th in Phalen Park, St.Paul. It couldn’t have been a more beautiful day for the event. Families raised money and walked to support SMA research to help find a cure for this difficult diagnosis. SMA is the number one genetic killer of children under age 2 in the world, and is a diagnosis that everyone at PHS is glad to be able raise and awareness for and to support.
The event was a great success and not to mention quite a bit of fun. There was a cake walk, cotton candy machine, hot dogs, nachos, and of course the 5K itself. We were able catch up with many of our patients and meet new friends. You may remember reading about PHS patient Braylin in our last newsletter, The Pulse but in case you missed it, we’ll give you a little recap of Braylin’s amazing story. Braylin and her team of walkers were at last Saturday’s event. We were able to catch up with one of Braylin’s home care nurses, Laura at the event, she was even one of the lucky cake walk winners.
A Bit About Braylin
Braylin was born at the tail end of 2010, and along with her family, and team of healthcare professionals has been fighting against her Type 1 SMA diagnosis ever since. “The general diagnosis is that babies with Type 1 SMA do not live past their first birthdays.,” says Matt, Braylin’s dad. “But, there are also thriving 12-year olds with Type 1 SMA. Our early diagnosis was critical, along with finding the right caregivers, including PHS.”
Today, Braylin is thriving at home with her parents. And although she cannot communicate with her voice, “she talks with her eyes, and it’s very clear to us what she is saying.”Shannon, Braylin’s mom explains. She loves looking out the window, her time stretching on the floor with mom and dad and listening to music.
Powerful resources
Matt and Shannon offer some guidance to parents of medically-fragile kids: “Have hope: there are many trials and research programs underway. Get support: there are many great blogs for information, discussion and advice.” While they give and get support from other parents, Matt and Shannon also treasure precious moments with their child at home. Just like other new parents.
Do you know of any other resources that you’d like to share with other families? We’d love to hear from you.
Originally published: September 23, 2012