The universe is at it again.
July 1, 2012 Leave a comment
After getting Slapped by the Universe recently, I thought she was done with me. But here she is again.
Like many people, I have friends on Facebook that I haven’t spoken to since high school. I am naturally curious, and pretty open, so if I get a friend request and I remember you, I will accept. I don’t mind that we may not have been close back in the day, or may never see each other again, I genuinely like most people I have met in my life and happy to see them again if only in photos. In most cases, I know them better now than I ever did. In some cases, I am drawn to their updates and stories and find them fascinating individuals.
A year ago, a series of posts caught my attention and it has been captured ever since. The poster, someone I went to high school with and haven’t seen or talked to since, has been telling the story of his 6-month-old daughter’s diagnosis and battle with SMA (Spinal Muscular Atrophy). Typically babies with SMA Type I will not live past the age of two. It’s a beautiful story of love, advocacy, and struggle, told bravely. It’s not the first time I have born witness to a person’s open struggles through social media, but there is something about this little girl, Braylin. I feel compelled to help in any way I can to further SMA awareness, and help her family with the financial strain.
Like most people in this Great Recession, we have limited funds and a strict budget. I wish I could support every cause, every walk, and every girl scout cookie seller I come across, but it’s just not possible. Instead, I have selected a small number of causes that are close to my heart to support, giving what I can. One organization I support is the Alzheimer’s Association, since the disease took my father just 2.5 years ago. Sadly, SMA is not on my list. And strangely, it has really been bothering me.
It’s as if the universe felt my struggle.
“SMA research offers a ‘collateral benefit’, meaning that scientific discoveries in the field of SMA will be strongly translational towards a host of other serious conditions; this also means that progress towards treating and curing spinal muscular atrophy will directly strengthen that same progress within numerous other medical categories. Advancements in the field of SMA research might therefore offer hope to not only members of the the SMA community, but also to the wide range of patients, families, and friends who have been affected by many other serious illnesses. Among the diseases and disorders that benefit from SMA research: Alzheimer’s…”
The NIH has determined that SMA is closest to a cure out of 600 other disorders, and well known researchers have determined that a viable treatment for SMA is possible IF the research is funded. There is a lot of hope among the SMA community, and all the communities collaterally benefiting from their success, including Alzheimer’s, Parkinson’s and ALS/Lou Gherig’s Disease.
Once again, universe, well played. And thank you for not slapping me this time.
I’m not sure how this message from the universe will manifest yet, but I have added SMA to my list of causes as a subset of Alzheimer’s. Consider this your introduction. You may not have any knowledge or been directly affected by this disease, but clearly the research is important to many of us.
Beyond the diseases, this experience has reminded me that we can find inspiration from anyone at any time. It’s important to stay open the amazing stories happening around us and continue learning from the people that inhabit our world. What began as a story that tugged at my mother’s heart, is ending as a larger message about listening to the universe and what she is telling us. My gut was telling me that Braylin’s story was important to me, I just had no idea how our stories would intertwine into a shared goal of a cure for neurological diseases.
To meet the little girl that inspired this post, you can find her at StrongHeartWeakMuscles.com. Braylin’s parents are fighters, and they do everything they can to give her what she needs. Please consider contributing to their fund to help offset the astronomical cost of care. Just the initial set up for in-home equipment is over $20,000 with future costs over $100,000.
You can learn more about SMA at Families of SMA.