I was a minor celebrity this week. Maybe you saw me in this article for the Catholic News Service. I was also excited to see Kendra get so inspired by our St. John’s tradition that she hosted, and filmed, her own Nativity of St. John the Baptist bonfire! Lastly, Our family was featured in an article for leapsmag about the drug Spinraza. Now when I Google my name, a lot more interesting stuff comes up!
That last article mentions the new and exciting gene therapy treatment that is now FDA approved for children under two with SMA. I encourgage you to take the time to watch this video so you can understand why parents like Tony and I are SO FREAKING EXCITED about this treatment. I expect that as studies with older children continue, this drug will eventually be made avaiable to Fulton and Teddy. It’s practically a cure. It will replace the gene they are missing and stop SMA in its tracks in one dose. ONE DOSE. It cannot however undo all the damage done to their bodies by SMA already. Some people have asked me if gene therapy will allow Fulton and Teddy to walk. I’ll never say never, because science continues to amaze me (and the boys would love giant mech suits) but Fulton especially has lost a lot of muscle mass through the years, and he has significant contractures in his legs and arms. This drug can’t undo that. And to my understanding, Fulton and Teddy can’t regain the muscle they’ve lost; only build what they still have. Fulton will probably still need his bi-pap and g-tube feeds for the foreseable future. Teddy has more existing strength to work with, but it will take a lot of time and therapy to build up his muscles. But regardless, walking isn’t the most important thing. People tend to get hung up on that, but if this medicine stops the progresion of the disease in ONE DOSE that is enough! The boys can live very full lives without walking.
Also, we’re less than a month out from our St. John’s party. This will be the first year in our new home and as one friend has already asked “Is your new town ready for us?” Parking may be the only challenge, but I’m not worried about noise or crowds as there’s been plenty of loud celebrations around here. In fact, we may need to invest in a sound system, otherwise, I don’t know what the neighbors will think of us. (That new family doesn’t know how to party at all!) At the old house, we had a large open bonfire pit…which wasn’t totally kosher with the fire department. We knew we’d need to invest in an actual enclosed fire pit if we didn’t want a surprise police presence at our next event. We purchased it a few weeks back, but only broke it in last week. We still have s’mores supplies left so, I anticipate a few more uses before the big day.
Seventeen year old Kelly is freaking out because she’s going to see Lenny Kravitz in August. Somehow, none of my kids know who Lenny Kravitz is. As we know longer have a cassette player, I have been pulling up YouTube videos to educate them. Tony isn’t coming and doesn’t quite understand my enthusiasm for Lenny and not say, The Piano Guys. Here’s to trying to recapture some of my youth before I reach an age where I’d rather go to a Piano Guys concert than a Lenny Kravitz concert.
Because I’m not already under a lot of deadline stress, I was gifted with the news that our family’s upcoming Airbnb reservation was suddenly cancelled without explanation. When I found a large wheelchair accessible house near Tony’s family in the Midwest, I heaved a huge sigh of relief. This summer’s trip was going to be easier. Since making the reservation, I’d stopped worrying about the trip and started looking forward to it, even though it includes days of driving. But now, it’s back to square one. What’s galling is that while I was frantically sending the host messages, asking “Was this intentional? Perhaps a mistake? Could we please rebook??” as the listing still showed availabilty for the entire lenght of our stay, he chose to not answer my messages but instead lowered the price of the listing, and it was snapped up in a couple hours. As there are no other wheelchair accessible Airbnbs in our price range, I’m thinking an accessible hotel room for Tony and I and the younger boys might be the best option. The older three can stay with family. This is the heads up that when I write a post about our trip, I’m going to mention numerous times our lost rental and maybe even a video of us leaving a bag of flaming poo on the doorstep…no just kidding, I wouldn’t do that.
Reminder: newsletter goes out soon- probably post speaking engagement. Learn the editors response to receiving my manuscript! I’ll reveal whether or not I was truly prepared to give three meaningful talks! I’ll share all the good things I’ve read that weren’t Facebook but that still distracted me from writing and preparing! Sign up HERE!
Fun May events continue! Who needs free time for writing?! Let’s go to an art show!
How was your week? Write it down then link it up below! Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
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