As we wait for Hayden to get approved for treatment we've been advised by her team at Riley that we need to protect her immune system at all costs. So inevitably big brother Avery woke up last Monday with a bad cough, runny nose and low grade fever. He hasn't been home with us all week. We've enjoyed our one-on-one time with our girl, but we sure do miss her brother. For the few days that all four of us were together after finding out about Hayden's diagnosis he was a welcomed distraction to a couple of very sad parents.
We are so thankful for supportive parents who are the best grandparents. Avery has bounced around all week from Grammy's to Gigi and Pap Pap's house. Undoubtedly this mischievous little guy has been spoiled rotten.
Daddy and I gave sister a spa day, complete with baby massage, and lots of kisses. Little does she know that momma and her have lots of these together in our future.
A little more about the treatment we're pursuing for Hayden: with SMA our girl is missing a gene that allows her body to produce a critical protein. Her nervous system needs this protein in order to sustain and function. She is an ideal candidate for the treatment Zolgensma. This is an SMN-enhancing therapy that works by replacing the missing or mutated SMN1 gene. It's given through a one-hour intravenous infusion. A virus, AAV9, carries the replacement gene into the body and the virus "infects" the cells with the new DNA. This does not actually infiltrate Hayden's DNA makeup, but more or less acts as a free-floating gene that can continue to produce the protein she's lacking. Hopefully producing the SMN protein forever. Ideally this will prevent any further progression of the disease and she'll maintain all remaining motor neurons giving Hayden hope for a life that was unimaginable for SMA babies just a few years ago.
If this sounds like an impressive treatment, it is. And it comes with an impressive price tag too. Hugh thought I was a little high maintenance. Well, the apple doesn't fall far my friends. Straight out the womb and girlfriend needs the most expensive drug on the planet.
Please continue to pray for our girl. Our specific prayer right now is that insurance will expedite approval for this treatment. Every single day matters. I've never hated the weekends so much, because time stands still, and so does progress on her case. But our hope remains and we know that all of this is in His timing.
Love,
Hugh, Logan, Avery & Hayden
Praying for your family and tiny Hayden! Praying for God’s protection for her fragile body and for strength to endure this wait for insurance! 😘 😇 🙏
Praying for Avery to get well and his patience while separated from mom and dad. And praying for the insurance to be approved rapidly!