The most frequently asked question that Hugh and I have received over the past several weeks has been "how can I help?". We've heard it hundreds if not a thousand times. I know I'm starting to sound like a broken record, but the support has meant so much and has helped to spur us on through the exhaustion of a newborn and the challenges of her diagnosis. Occasionally, in hopes of a little chuckle to help lighten the otherwise heavy mood, we had responded with "well, can you cure our baby?" or "can you write us a check for $2M?". We didn't have too many people offering to help in those ways, so prayer is what we asked for because that's truly what we needed. And what we still need as we wait expectantly for her to respond to her treatment.
**This sweet thing is ONE month old today!
Now that we are on the other side of her infusion we have another way for you to get involved and be a part of Hayden's SMA story. You may recall from earlier posts that the treatment Hayden received has only been FDA approved since May of 2019. Each of our babies had a 25% chance of an SMA diagnosis, and had this been Avery (born May 2018) we'd be looking at such a different future for him and for us. It's through the generosity and support of communities like ours that funding was raised, research was conducted and gene therapy was born. Hayden's treatment is not a cure. SMA is something that she will fight for her entire life. But how amazing would it be if someday there *was* a cure. When families like ours receive an SMA diagnosis, the course of action could be clear and the future could be bright (even brighter than ours!).
Please consider participating in our t-shirt fundraiser with all proceeds benefiting CureSMA.org. Additionally, if you're local we'd love to see you on May 16th for the 1st Annual Here for Hayden SMA Awareness Walk in our hometown, Salem, Indiana.
T-shirts and donations here:
The Facebook event can be found here:
Thank you for considering helping this cause that has quickly become so near and dear to our hearts.
Love,
Hugh, Logan, Avery & Hayden
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