Abel’s Army

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.

07/09/2025

Made the trip back to Palo Alto, CA for 9 month check, post Gene Therapy. Flight went quick and smoothly. Abel loves to go to Dave and Busters for lunch and games and it was our lucky day because Wedneday is half price games. He’s mostly in it for the tickets to get new stuffed animals. He’s a happy boy, notice his new toothless smile, he finally lost his 3rd tooth and has 2 more loose. Also D&B is close to Abel street!

05/02/2025

Yesterday we made the trek to Salt Lake City to see Abel’s neurologist, Dr Butterfield early this morning. We had a great visit, we were really grateful that he spent some time with us informing us of new drugs and treatments in the making and it truly sounds promising! We discussed how we made the decision to take Abel off steroids and today is his last day. We expected him to be disappointed In our decision, as it is the “standard of care” to always stay on steroids and it seems most people are too afraid to take their kids off of them. Instead we were pleasently surprised when he praised our parenting and told us that he thinks the clinical trial should continue tracking his progress as they have no data on kids who discontinued steroid use after receiving gene therapy. (We are in a bit of a stand off with Stanford as we told them repeatedly that we wanted him off and then they were surprised when we did it and then informed us we weren’t supposed to take him off.) We also signed up for another “trial” that consisted of a cheek swab so they can analyze his DNA and genetics further to gather information to see if there is any other genetics that could play a part in how his disorder progresses. The frustrating thing about DMD is there are many different variations and no two kids have the same progression patterns. They think it could be due to other genetic factors playing a part in the severity and progression. We are excited to contribute to studies geared towards understanding DMD better. It will also potentially let us know If there are any other conditions he might face so we can preventatively treat him or be prepared for them.

04/16/2025

On Friday night I had the honor of giving another testimony to the “ways and means” committee, which is the committee that decides if it’s in the budget or not to approve House Bill 3192. We are requesting that they appropriate the OHA $4,000,000 to test for 5 different diseases at birth (including DMD) via bloodspot screening. Abel got to come with me and what a blessing he was! He hugged me tight while I tried to keep my composure, when we walked off stage, while holding my hand he gave it a little squeeze and whispered that he loved me. When we got to the car, before heading to reward ourselves with some ice cream, he said “you totally did good mommy” 💚. I don’t know how I got so lucky to be his mom, but I am so blessed!

Here Is the clip of my testimony 🙂

https://olis.oregonlegislature.gov/liz/mediaplayer?clientID=4879615486&eventID=2025041001&startStreamAt=2715&stopStreamAt=2845

Edited to add, this was in Lagrande at the college on a theater stage in from of probably 15 political members and hundreds of others in the audience. There was a big bright light shining on us and a large timer set for 2 minutes and they absolutely cut you off if you went longer. After doing this is Salem I thought I had conquered my fear but this was even more intimidating!

03/22/2025

Our one and only pic of our trip to Stanford. It was a big one. Yesterday he had an MRI of his leg. He did good, by the end he was “over it” and wanted out. He was struggling to lay still for hours, understandably so. Today we had labs, a 2 hour physical outcome test, a check up and then an echo. His heart looks great still. We still can’t believe it has been 6 months since he got gene therapy! He is feeling great! We are weaning him off the steroids to see how he does without them. We are at the airport about to head home and we get to see brother tomorrow for his Birthday!

02/26/2025

Today I got to attend my first in person House Health Committee hearing at the Capitol In Salem. I got to meet our district’s representative Mark Owens as well as Rep McLain and testify alongside another DMD mom. Fortunately I was able to give my whole testimony this time, I wasn’t cut off like last time and I didn’t lose my composure! I feel relieved and ready to go back as many times as it takes for them to pass the newborn screening bill, enabling all babies to be tested at birth for DMD.