Four year old Liam Mattson of Solon is enrolled in Pre-K at Lakeview Elementary School. His mom, Taylor Mattson, says that his favorite subject in school is recess, he loves to “play” his piano toy, listen to TNT by AC/DC, and is the biggest Hawkeye sports fan.
Liam also has STING-associated vasculopathy with onset in infancy (SAVI), which is a super rare, genetic autoinflammatory disorder. As a result, Liam and his parents have spent countless hours at the University of Iowa Stead Family Children’s Hospital in Iowa City. “Liam has been in the hospital atmosphere since birth, being born at 27 weeks, spending six months in their NICU,” Mattson said. “We have been in and out of the Stead Family Children’s Hospital more times than we can count, so it’s always been a home away from home for us with such familiar faces and all the love they give us.”
Liam and his supporters will be participating in the Bone Dash 5K & Monster Mile next Saturday, October11. The event is in its fourth year, and all proceeds raised will go directly to the Joining Hands Pediatric Rheumatology Support Group at the University of Iowa Stead Family Children’s Hospital.
“Because it’s not just about Liam,” Mattson said on why the event is important to her family. “It’s about every child who needs specialized care. To know that this event directly supports pediatric rheumatology right here in Iowa makes it deeply personal for us.” Mattson says that the University of Iowa Hospital and Clinic’s (UIHC) Pediatric Rheumatology Department has played a huge role in keeping Liam healthy and happy and has been a god send for the family.
“We are forever grateful for them, from being born early during COVID, no parents, visitors, etc., they immediately became our family and [were] our biggest supporters,” she said. “When [Liam] was diagnosed with SAVI, our amazing Rheumatologist Dr. Polly Ferguson knew she had the resources and connections to get him to the National Institute of Health in Washington DC.”
Mattson added that the hands-down hardest part of Liam’s diagnosis has been just how rare the disease. Mattson says that the most recent statistic is that Liam is just 1/88 diagnosed patients in the world, as well as the first premature baby to have ever been given the diagnosis.
“I have no families locally who are going through this journey or even in the states [who] I can pick up the phone and talk to,” Mattson said. “The only parents I have been able to connect with that have children diagnosed with this live in Melbourne, London, Canada, and now Turkey. Knowing how far he’s come and just how resilient and strong he has always been, he’s tougher than most and has been through more than most will ever go through, yet he’s always goofy, smiling and such a force,” Mattson said. “My biggest blessing.”
Besides frequent visits to D.C. and Stead Family Children’s Hospital, Liam takes medication twice a day to keep his interferon levels in a healthy range and keep inflammation under control. Mattson says that balancing Liam’s health while ensuring he still gets to be a kid can be hard.
“There’s a constant mix of emotions, [like] fear, worry, hope, gratitude, exhaustion, and joy,” Mattson said. “When your child is facing something so rare and so big, you feel everything at once. I’ve learned to celebrate the smallest victories and hold onto them tightly, because they mean everything.”
Because of the rarity of SAVI, the path to Liam’s diagnosis wasn’t a straightforward or easy process either. Although Liam was born three months early, he was sick in a way that typical NICU babies were not, and battled sepsis, thyroid issues, Patent Ductus Arteriosus of the heart, and silent aspiration. Liam also required heavy oxygen support due to Bronchopulmonary Dysplasia (BPD).
“He was always referred to in the NICU as the baby with “really sick lungs” and [we] would often hear that [staff] haven’t seen anything like this before,” Mattson said. “I knew in my heart something wasn’t right.”
When Liam was two years old he was transferred from the Neonatal Team to the Pulmonary Medicine Department, where the family met with Dr. Daniel Hinds, whom Mattson says was amazing.
“We decided to do a genetic testing, because [Dr. Hinds] was very adamant that he thought Liam had the symptoms for Cystic Fibrosis or another lung related genetic disorder,” Mattson said. “Specifically [that is] what we were testing for in the beginning but were surprised to find what results came back.”
Besides the support from the UIHC, Mattson says that the Solon community has been an important support system for the family inside and outside of the hospital.
“Family and friends have shown up for us in so many ways, big and small,” she said. “The Solon community has wrapped their arms around us since day one. Knowing we don’t walk this road alone gives us the strength to keep going.”
Mattson hopes that the funds raised from this event and others like it will give doctors and researchers more resources to better treat this rare condition and said that every dollar raised is a step toward answers and a better future for children fighting all types of rheumatoid conditions.
“It shows that rare doesn’t mean invisible,” Mattson said of the upcoming 5K. “It sends a message that our community cares, that kids like Liam matter, and that we can make a difference when we come together.”
The event will take place at the Solon Recreation and Nature Area (SRNA) Timber Dome Lodge.
Mattson says that he’s a lionhearted little boy.
“My biggest hope is that his health stabilizes and that treatments continue to improve, giving him the chance to live fully. Beyond that, I just want him to experience all the normal joys of childhood—friends, school, adventures, sports, and dreams for the future.”
4th Annual Bone Dash 5k run and 1-mile “Monster Mile walk details
When – Saturday, October 11
Where – SRNA Timber Dome Lodge
Time – 10:00 a.m. start for the 5k and 1-mile
Registration – Online at https://runsignup.com/Race/IA/Solon/BoneDash5KMonsterMileFunRun
Registration ends at 9:50 a.m. Saturday, October 11.
Cost: 5K – $35.00 +$3.10 sign-up fee, $10.00 age 5 and under + $1.60 sign-up fee.
Monster Mile – $20 + $2.20 sign-up fee.
Registration packet pick-up: Timber Dome Lodge at the SRNA
Packet Pick Up 1 – Friday, October 10, 5:30-7:30 p.m.
Packet Pick Up 2 – Saturday, October 11, 8:00-9:30 a.m.
NOTE – Packets are not able to be mailed.