Abel’s Army

10/10/2025

1 year post gene therapy check up in California this week. Grandma Sherry got to come on this trip and see first hand what all our little superhero goes through. She is thoroughly impressed. Abel told me he was having a fun vacation. I told him vacations should not consist of pokes and MRIs but it was a nice break from normal life and I love his outlook💚

🗓️Monday- we headed to CA with our flight delayed before we even left Baker.
Got the news while waiting for take off that his MRI apt was canceled and the coordinator asked if we could come back next week, that was a hard no! She found a spot on Friday and asked if we could extend a day, I’m sure glad I always throw in extra underwear!
🗓️Tuesday- we enjoyed the pool since we didn’t have an appointment anymore. We also met up with another family who is getting ready to start the same trial. We really loved hanging out with them!
🗓️Wednesday- 6:30 am Cardiac MRI with IV for contrast dye.
10 am echo and EKG
12:30 physical exam
Finally lunch time and of course games and prizes at Dave and Busters- Wednesday is half price games if you didn’t know 😉
🗓️Thursday- 8:30 am blood draw
9:30 am 2 hour PT assessment
Then paperwork and consents
Abel has happily agreed to extend his time in the trial to a 5 year period of follow ups. He will go back every 6 months for 3 year and then once a year for 2 years to allow them to continue to collect data on how the gene therapy is affecting him.
🗓️Friday- 7:30 am leg MRI. This one took about 2 hours and he has to lay very still. He was very “over it” by the end. So was I, I think I took 15 mini naps sitting straight up in a plastic chair in the cold room with nothing to do! Your not allowed to take any electronics in there! The cardiac one was in the children’s hospital so they at least had movie goggles for him!

Now we sit at the airport and kill time waiting for another delayed plane home. It’s been a long week but we made the most of it and had fun!

10/08/2025

Almost 7 years ago we took our older kids to Costa Rica, Lexi had just turned 12 and Aiden was almost 9. In just 2 months we are going to take Abel there for his 9th birthday. This was Aiden’s shirt he got when we were there. Abel is a huge nature and animal lover. He really wants to see a poison dart frog and an oselot. We are excited to try out some hot springs and explore, he is our favorite adventure buddy! Traveling and seeing the world is the best gift we can give him. Today he snuggled up to me and I told him he is a good boy and he said “your a good
Mommy, thank you for always taking good care of me and taking me places”. Not only does he make it easy to be his mom, I feel privledged to be his mom and he brings us joy and laughter each and every day 💚.

Oh also I forgot, tickets are super cheap right now, under $300 out of Boise. We were going to do Hawaii but Costa Rica was even cheaper!

10/03/2025

We had our first MD clinic in Boise on Wednesday, the morning started out a little stressful when we realized we were going to be late because not only Boise traffic but there was an accident. Fortunately after the receptionist told us we’d have to reschedule (after a 5 hour round trip drive and leaving at 5 am) a nurse saw the note and called us and told us we were fine to come still. We saw a wonderful PT who found Abel’s silly personality and dance moves as funny as we did, and explained to us what they are looking for and what they predict for future regression. Fortunately Abel is still
looking so good he didn’t have a prediction. He scored a 30 out of 34 on the North Star assessment which is what they use to assess their physical activity. He is still doing really well on stairs, running, walking and getting up off the floor 🙏. They reminded us about energy conservation, basically use your energy to play and be a kid, not to walk long distances just to get from point A to point B. We also saw a dietician and he is doing great as he is a healthy eater and loves meat and vegetables. He has not gained any weight since starting the new steroid 3 months ago which is great! He doesn’t complain about wearing his night time stretching braces which help to keep his Achilles tendon and calves stretched and loose. He had his first spinal xray to check for any curvature or sculiousis and he is looking good so far! Overall a really great check up and so nice to know that he is doing as good as he can with what he was dealt. Next week we head back to Stanford on Monday-Thursday for his 1 year follow up! Lots of tests but we get to meet a new friend while we are there!

09/28/2025

Today marks 1 year since sweet Abel had his Gene Therapy Infusion. After the infusion we thought he might not need to be on steroids anymore but he declined slightly so we made the hard decided to put him back on. Luckily he had been on prednisone long enough that we were able to get him approved for a DMD specific steroid called Agamree. As soon as he started that we noticed so many positive changes in his energy and stamina, no mood swings or anger and so far no weight gain. He is happy, and thriving! Next week we go back to Stanford for his 1 year follow up assessment and labs. We get to meet another boy with DMD who is 10 and about to start in the same trial 💚

Tonight Abel and I watched the movie A Dogs Way Home and he is such a sweet, sensitive guy. He teared up several times but insisted he wasn’t (he literally doesn’t cry, ever). He is such an animal lover. He got worried and asked me if we have a pound here, and said he would be really sad if his Pepper had to go there.

09/07/2025

Once again feeling incredibly blessed by our amazing community and the turn out for the 2nd annual walk for awareness for Duchenne. I’m very thankful for everyone who pitched in and helped and showed up regardless of a little rain. To top it all off one of my friends in Vale shared the event and Abel got to meet a 9 year old boy who lives in Ontario who also has DMD. We had no idea there was another boy with DMD so close. I cried when I met them. I am so happy that they came, DMD is a terrible disease but now we know we are not alone in rural eastern Oregon.

09/04/2025

Just a few more days left till the walk! We are excited to see you all and spread awareness. I have a few adult medium, large and XL shirts left and some YL as well if you would like to claim one before the walk!

09/02/2025

Reminder to light your porches with your green lights. His fight is our fight!! 💚💚💚
Please post and tag us in your porch light photo!!

08/28/2025

We would love to see you at the walk!

Abel Bain, 8, was diagnosed with Duchenne muscular dystrophy, a severe form of muscular dystrophy that leads to muscle loss and weakness.