One of my bridesmaids, Becah, called me this morning to let me know she won't be coming to the wedding. Her six month old son, Riley, has just been diagnosed with spinal muscular atrophy and it's likely that he'll be having a hard time by next January. He's mostly healthy now, although he has some trouble moving around, but it's a progressive genetic disease and there isn't any treatment for it right now.
It's hard to talk about something like that over the phone. My impulse was to go over to her house, but going over to Bec's house involves a flight across the country these days. So, we talked and then I let her go so she could call two of my other bridesmaids and break the news. I literally can't wrap my brain around what she and Marc must be feeling right now and it's amazing to me that she even thought as far ahead as the wedding. I have an overwhelming urge to do something to help fix it, but it's one of those moments where I just keep coming up empty. At most of the major trials of my adolescence/adulthood, Becah was usually the first one I dialed and the first one to show up and talk it out. It's hard to think about celebrating without her, when she'll be carrying so much by next winter.
Hello! I'm a mommy to an almost 15 month old SMA Type I little girl named Stella who was diagnosed at just one month of age. I'm sorry to hear about your friend but please let her know that there are things she can do to help her little one. More and more SMA kiddos are living longer thanks to different means of helping them. If she is interested in chatting, I would love to! Stella's website is www.caringbridge.org/visit/stellaturnbullturnbull. While life is a little more complicated, we still try to live it the best we can, even if we have equipment in tow. :) Stella is on a bipap during naps/nights, has a gtube for feedings, and suction/cough assist but these are all very normal parts of our life now. Best of luck to her and little Riley!
ReplyDeleteSarah Turnbull, Mommy to Treyton (3 and SMA-free), Stella (15 months and SMA Type I), and Baby #3 (supposed to be SMA-free)
Thank you! I'll let her know.
ReplyDeleteI am so sorry about your friend's situation. However, I wanted to let you know that my sister, a registered nurse, is extremely involved with SMA support and used to care for a child with the disease. If your friend is interested in e-mailing her to ask questions, just let me know and I will give you her contact information.
ReplyDeleteHere are is a website she has told me about and that your friend can go to.
http://www.smasupport.com/
I hope it helps!
Please tell your friend Becah that there is hope for her son. My son has SMA as well and will be FIVE in August! Tell her to check out www.smasupport.com or our site www.our-sma-angels.com/charlie. If she wants to reach out, please let her know she can contact me too.
ReplyDeleteHugs!
You could always make a donation in Riley's name to Families of SMA (www.fsma.org), or, better yet, call them and join their organization. You'll learn a great deal about SMA and Becah will appreciate your sincere interest. The Families of SMA National Conference was this past weekend in Boston and there were close to 800 attendees. Becah and Mark are definitely not alone in dealing with Riley's disorder. Good Luck!
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