how Hudson’s Handlebar Heroes was started
Hudson’s Handlebar Heroes started as a grassroots, family-led cycling team to honor and remember Hudson and turn our love of bikes into something bigger than ourselves. We’re a local family working to build a supportive community through cycling, while raising awareness and funds for families affected by ASXL-related disorders.
Our mission is simple: ride with purpose and keep Hudson at the heart of everything we do; fundraise through sponsorships, merch, and donations to support the ARRE Foundation and ASXL-related disorder research for kids like Hudson; bring awareness to Bohring-Opitz Syndrome (BOS) and other ASXL diagnoses; and have fun riding bikes together while building community. All funds we raise go to the ARRE Foundation, a family-led 501c3 nonprofit dedicated to education, support, and research for ASXL-related disorders.
Frank fell in love with cycling in 2024, and after a few rides he and some close buddies thought, “Why not turn this into something more?” That idea became Hudson’s Handlebar Heroes—a team riding in Hudson’s memory, raising awareness for BOS, and supporting the ARRE Foundation through every mile. What began with race day has grown into a local movement; in 2026, we’re planning a north Spokane club ride along with more local races and events, all focused on riding together, supporting one another, and keeping Hudson’s story alive.
Every mile we ride helps keep Hudson’s memory at the center of a loving effort to move research, care, and hope forward for families living with ASXL-related disorders. In 2025, our team raised just over twenty thousand dollars, all benefiting the ARRE Foundation and its work to improve care and advance research for ASXL-related disorders, and we’re excited to see what the coming years will bring for the team.
Riding for ASXL research
our family & hudson’s story
After waking up a bit more I started to not feel good and was uncontrollably shaking to the point it hurt. My body was in shock from losing so much blood. The nurses pushed so many meds just to keep me stable and get my levels back up. I had two blood transfusions and iron to get me feeling better. At this point, it was 8 pm, and no visitors were allowed to come see me anymore. My dad was the only one able to come see me, only because he works for Life Flight and had his flight suit on after he rushed home from Tri-Cities, so they made an exception.
Frank went to check on Hudson off and on all night, bringing him any drops of milk I had gotten for him.
The next day, I tried to sit and stand up so I could go see Hudson, but it just wasn’t going to happen. I was so dizzy anytime I tried. I wasn’t able to see him until the day after that. It was a surreal moment meeting him for the first time after not knowing through pregnancy if we were ever going to get to meet him, and then through his birth, and almost not making it. Every day after that, we saw Hudson. The only day I wasn’t able to was when I got mastitis so bad I couldn’t even get out of bed. It broke my heart even more.
We still didn’t know if Hudson was going to pull through everything he had just gone through. The following days, he had test after test done and multiple scans to confirm the findings from when I was pregnant. The biggest thing was he didn’t need heart surgery! It was a literal miracle. Doctors told us his aortic arch was likely closed or narrowed, and it turned out to be fine! However, everything else that they found during pregnancy was still with him. Thankfully all of his other organs checked out.
In the following weeks, we finally got a genetic diagnosis back: Hudson had what’s called “Bohring Opitz syndrome,” or “BOS.” This rocked my world. I knew he had something going on, but for some reason, knowing exactly what it was and all the things that come with it was heartbreaking and overwhelming. I think I was holding out for a miracle, hoping whatever came back wouldn’t be so severe. BOS is ultra rare and only 300 kids in the world have been diagnosed with it, and less than 60 in the US, so there isn’t a lot of information/research on it. None of his doctors had heard of it either. We were just going to have to let Hudson show us what he could do and what he needed. Thankfully, this wasn’t a syndrome that Frank and I could have passed down; it was a malformation when his DNA formed. It gave us some answers, but not all. We still didn’t know how long we would have with him or what his quality of life would be.
We were in the NICU for over two months. From the beginning, we told ourselves and Hudson’s team of nurses and doctors that we didn’t want to do things to him, but instead we wanted to do things to help him and give him a quality of life. In the NICU, you aren’t able to have any visitors under 18, so poor Frankie wasn’t able to meet his baby brother, whom he’d been so excited for. About a month after he was born, we decided to do a surgery to bring Hudson’s jaw forward more. Before this happened, we asked our palliative care team if there was any way for Frankie to come meet Hudson before surgery. They made it happen, and Frankie & Hudson finally met each other. This was a moment I had waited for since the day I found out I was pregnant. It was probably one of the most bittersweet moments we have ever experienced. So happy and excited Frankie got to meet and hold his brother but also filled me with sadness that I couldn’t promise Hudson’s homecoming or how long we would have with him. It didn’t matter to Frankie, though, he was just over the moon about getting to hold his brother and love him unconditionally.
After surgery, they keep any babies with this surgery intubated and sedated while they slowly bring their jaw forward. Kids with BOS have difficulty eating orally to begin with, and so we were hoping this would help with that and just open his airway up and allow him to swallow better. He did well with surgery, and after about a week, it was time to extubate him; he also did well with that.
A couple hours later we got a phone call saying Hudson had coded. I dreaded every time the hospital would call, leading up to this, it was always just an update that he was doing well, but in the back of my head, I knew it could go the other way at any point. The doctor said that they had to re-intubate Hudson. He had a mucus plug that blocked his airway. Later, we found out he had gotten a lung infection that was caused by being intubated for so long, causing the mucus plug. This was the second time he was almost taken from us, and at this point, we were barely holding on.
Fast forward another month, and we were on the road home. We were so excited to get out of the hospital and just have some normalcy with our baby and for him to get the 24/7 love he deserves. Also, not having to drive almost two hours every day to see Hudson was a plus. For two months, we drove 50 minutes one way to the hospital to see our baby and had to leave our other. Thankfully, we have had so much love and support from our friends and family, an overwhelming amount of it, and we truly wouldn’t have been able to get through this without them.
After two and a half days of bliss at home, we were back in the hospital, not sure of what was going on with him. He had a higher heart rate and needed more oxygen than normal. After hours in the ER, we were re-admitted into the NICU, which once you leave the NICU, you don’t go back generally, but thankfully, they let us back in! Our doctor, the next day, had told us this was likely respiratory failure, and we should consider taking him home and doing comfort care. I was not ok with this answer. I asked if we could do some more tests before we jumped to that. In the following days, we still didn’t know for sure what was causing his high heart rate and oxygen needs, and he was put back onto CPAP. I felt like we were back at square one. The doctor performed a full infection workup and found a UTI, which we had already tested for in the ER (why it didn’t show, we don’t know). His little body just couldn’t handle it, which was causing the higher heart rate and increased oxygen needs. Eventually, he was doing much better and was put back onto his usual home oxygen and back to his usual self. We kept him in the NICU a bit longer to make sure we weren’t just going to end up right back in the ER. 20 days later, we were back home, hoping it would last longer this time. We were finally able to cuddle and just enjoy Hudson at home. This was also bittersweet. I was so happy to have him home where he belongs, but I was still so stressed, watching him like a hawk 24/7. Even though we didn’t want to be medical parents, we were. Hudson still required a lot of care at home, and it wasn’t easy to just go out and about with him. He was on home oxygen 24/7, which required him to lug around heavy oxygen tanks, a pulse ox reader to make sure he was stable at all times, and he had a g-tube in his little tummy for feeding, where I could still give him my milk. He still couldn’t fully swallow his own secretions or spit up well and would require suctioning everything out every now and then. He also needed breathing treatments multiple times a day and at night. And on top of it all, he has little baby casts on his legs to correct his club foot, which made diaper changes and dressing him hard! It was A LOT, but if that’s what he needed to be comfortable and with us at home, that’s what we were going to do.
Frank had started his time off from work when Hudson was born, so he didn’t miss any time with Hudson or Frankie, and after only having Hudson home for a week and a half, Frank had to go back to work. The night before Frank went to work, I noticed Hudson’s heart rate was higher than normal again. I waited until about 3 am before I took him into the ER, knowing it was probably another UTI, and sure enough, it was. We got antibiotics and were sent back home in the hopes that we caught it much earlier this time. The next night, I noticed his oxygen needs were higher, so again I took him to the ER at 3 a.m., not wanting to take any chances. They re-admitted him into the PICU this time. I was nervous about this day because all we knew was the NICU, but the PICU turned out to be great, and Frankie was able to come with me to see him. After a couple of days of him recovering, we were able to come back home to us. Finally, I felt like we had a lot of Hudson figured out. Hopefully, we will be able to avoid the hospital for a long time.
Fast forward three more weeks, and Frankie was sick with a cold. We dreaded this day because we knew Hudson wouldn’t do well with getting sick. I slept with Hudson in the other room while Frankie and Frank were sick in ours, trying to keep any germs away from him, but it was almost impossible, and Hudson still got sick. We were surprisingly doing ok with it and managing everything at home. He needed a bit more oxygen than usual, but his heart rate was okay. Sunday morning, September 23rd, my dad and Kathie came to make us breakfast. We got Hudson all settled in our room, with his humidifier running and a baby camera on him and his pulse ox, while we ate breakfast. He was fussing a bit, so Frank went in to check on him, and shortly after, so did I. Right when I came in the room, I saw Hudson blue, and Frank panicked, starting CPR on our sweet baby. I immediately yelled for my dad, and he rushed in to help. Hudson was in the best hands he could be in at that moment. I called 911, not even knowing what to say, and I just said we need life flight. In shock, I watched as my husband and dad gave our baby CPR, trying everything they could to bring him back. Before I knew it, we had a room full of people trying to help Hudson. I waited outside the room as they worked on him, but they just couldn't get him back. After an hour, I finally told them all to stop. He wasn’t coming back, and even if he did, it wasn’t going to be good. He would have been in pain and had more damage than anything. Our hearts were absolutely broken and shocked at what just happened. We spent the next few hours cuddling and holding our sweet boy as we said our final goodbyes to his body. During all this, Kathie had taken Frankie next door to their house. A three-year-old didn’t need to be a part of what just happened. Frank and I decided to let Frankie come see Hudson and say his goodbyes to his brother. This broke my heart even more than it already was. I knew Frank and I could get through this, but I was worried for Frankie’s little heart. We told him that Hudson is at peace now, with Jesus, and is pure and whole in his new body. Free from all his cords and restrictions and any pain.
He taught us all so much in his short life. How to love unconditionally, how precious life truly is, and what it’s like to lose so much.
Our journey has not been an easy one, but it happened for a reason, and we are so blessed to have spent the time we did with Hudson, even if it was short and had so many ups and downs. I wouldn’t take it back for a second.
The love and support our friends, family, and all of our medical teams showed us, and Hudson was truly amazing. All our lives will forever be changed by our little sweet potato. We love you SO much, Hudson Curtis, until we meet again❤️
Hudson was born on June 4th, 2024, but his story started long before that. At 21 weeks pregnant, after our anatomy scan, we found out our sweet Hudson had multiple abnormalities. We had already found out he was a boy from about 11 weeks pregnant after we had done the “Nips” testing, mainly just to find out the gender & all came back negative for anything else. After weeks and weeks of tests, ultrasounds & heartbreak, we didn’t have a definitive answer as to what exactly was going on with him or if Hudson had a genetic condition. We were told he would need two heart surgeries shortly after birth. His other abnormalities were clubbed foot, shortened long bones, an absent CSP in his brain, along with an absent or smaller cerebellum and pons. So we really didn’t know what his future would look like, but we couldn’t just give up on him. We waited weeks for genetic testing to come back in hopes of some sort of answer or picture of what things would look like. When we finally got the test results back, they showed nothing definitive. Around 35 weeks, we found out I was going to be induced at 37 weeks due to babies with growth restrictions having a higher risk for stillborn the closer you are to term. Hudson was only measuring at about 4.5lbs at that point. We knew he was going to be small, but I was HUGE. I was bigger than I was with Frankie’s pregnancy, and he was 8.7lbs when he was born. I had a lot of amniotic fluid with this pregnancy, most likely due to the abnormalities.
In the weeks before I had Hudson, we toured the NICU, knowing that when he was born, he was going to be rushed there. I just remember crying as one of the sweet nurses showed us around and pointed out one of the rooms Hudson could be in. I never imagined having a baby that would need the NICU or having a baby with multiple abnormalities.
I will never forget what one of my doctors said to me after another big anatomy scan confirmed everything shown on our original scan. He said, “I’m so sorry to take away having a normal pregnancy from you”.
This pregnancy was hard; it was nothing like Frankie’s. Emotionally & physically. I had Braxton hicks that started around when we found out about everything, and they just got worse. I was on light bed rest for the last couple of months, which is hard to do with a 3-year-old boy running wild. I was worried I would go into labor early because of the Braxton hicks and Hudson needed all the time inside he could get to grow. Thankfully, my body held out until 37 weeks. I don’t think it would have lasted any longer, though. I was already dilating at that point.
The morning of June 4th, we headed into the hospital, nervous but also excited to meet our baby boy. We got settled in and got my labor going & eventually got my epidural. My doctor who delivered Frankie normally is at holy family, but was coming in to Sacred Heart just for us. As soon as she got to the hospital, it was time to break my water. She and my nurse said I had more fluid than they had ever seen before, and I just remember my stomach deflating to almost nothing. Hudson did not like his cozy pool being taken away, and we started to lose his heart rate. My doctor had tried getting a heart rate monitor on him, and as soon as she tried to, I started bleeding large amounts. My placenta had detached (placenta abruption), and I was rushed to the OR for an emergency C-section. It was fast going; they ripped all the cords off the wall and didn’t even cover me up, and before I knew it, I was in an OR room by myself without Frank. Because it was an emergency, he wasn’t allowed to come with me. Frank had been left in a room all alone, not knowing for 40 minutes if his wife and baby were ok. They couldn’t tell him anything until I was in recovery.
My epidural hadn’t had enough time to kick in yet, and so I had to be put under, which I was honestly happy with. Having a C-section was also one of my biggest fears. I didn’t want to be lying there helpless, hearing everything that was going on and not being able to do anything about it. The last thing I remember was asking the girl who did my epidural earlier that day to hold my hand. I woke up in recovery with Frank holding my hand, and the first thing I asked was, “Are you ok?” I knew what had just happened was just as traumatizing for him as it was for me. Then I asked if Hudson was ok, not knowing if he made it through the trauma that just happened. He said Hudson was stable and was in the NICU. He tried showing me a picture of him, but I couldn’t see through tears and coming off anesthesia. He told me Hudson wasn’t breathing when he was born, and they couldn’t get him intubated. They had tried a couple of times and just couldn’t. Then Hudson started breathing on his own, and they were able to put him on CPAP. He wanted to stay with us and fight!
