Parenting a Child with a Chronic Condition

 

October 28, 2022 — Liam’s first bleed was in daycare when he fell on the playground and hit his head on the concrete. While there were no outside scratches, his cheek began to swell and continued growing. His parents were called, and they rushed him to the Hemophilia Center where Liam was able to get treatment to stop the bleed. 

This is a normal occurrence for Liam now. 

Matthew is the father of this adventurous four-year-old, and while Liam was diagnosed with Hemophilia A at four months old, parenting a child with a chronic condition has its challenges. 

What Is Hemophilia? 

Hemophilia is a rare bleeding disorder. It is usually hereditary, and woman are typically carriers. There are different types of Hemophilia, but generally this bleeding disorder is due to a lack of or no clotting factor in the blood. 

Clotting helps blood coagulate when there is an injury so bleeding stops. For someone with Hemophilia, their limited clotting factor makes it so when there is injury, they will bleed a lot more to stop the blood or they will not be able to stop bleeding at all. At this point, they would require emergency care. 

“Small things that happen to most people are big things that happen to people with Hemophilia,” Matthew said. “A minor thing can turn into four or five hours of us watching and waiting and hoping it’s not a head injury we’re missing.” 

Getting A Diagnosis 

They knew Jessica was a carrier of Hemophilia A because her father had it as well, but they hoped Liam would not be born with the condition. Regardless, they were determined to start a family, and the risk of a chronic condition was not going to scare them away. 

“We knew it was a risk, but we’re family people, and we wanted to have children. You know, no matter what happens, we’re going to love him,” Matthew said. 

Once Liam was born, it took Matthew and his wife Jessica four months to get a diagnosis for him, and they were informed that Liam did in fact have Hemophilia A and the doctors had known for a while. It was hard to hear, but they tried to take it in stride — this would not taint the love they had for their newborn son. 

“Both of us broke down with this fear,” Matthew said. “A lot of fears all of a sudden overwhelm us, and just the way they broke the news to us was just so matter of fact…It was tough.” 

Living With Hemophilia 

With Liam’s condition, Matthew and Jessica stay prepared and spend a lot of time informing doctors, teachers, friends, and others about the precautions required for Liam to thrive. Oftentimes, they find themselves on edge, waiting for something to happen. 

“You’re always waiting for that phone call to come through saying, ‘Come get him; you’re going to need to take him to the hospital.’ It’s worrisome just waiting for that phone call to come,” Matthew said. “We always say Hemophilia doesn’t define us or him or anything like that. It’s just part of who he is, but you love your son as much as you can and more than you ever can. It’s part of his life, and it will be part of his life forever, but I just want him to be happy and healthy, and that he can do all the things he’s always wanted to do, and that it doesn’t limit him — that’s the biggest thing.” 

Matthew expressed how Liam’s condition is often misunderstood and the severity of his disease and their precautions are not always taken as seriously as they would like. He shared how some doctors they’ve seen have not fully understood the situation, and this is more than just cuts and outward injuries. 

“This isn’t like if he has a cut on his hand he needs to go to the ER. This is like if he falls on the playground, please call us. He’s going to bounce, but three hours from now, he’s not going to be walking because his joint bleed is causing his ankle to swell up really big,” Matthew said. “It’s a lot of advocacy and a lot of patience — just finding the right people who can be on your side and be on your team, so we appreciate Accessia Health for doing that for us.” 

Finding Financial Assistance 

Liam’s parents found out about Accessia Health through the social worker at the Hemophilia Center. She sat down with them and asked about their needs and offered them the information required to apply. They said the first thing they did when they got home after finding out about the diagnosis was cry and then apply and hope they would be eligible for assistance. 

“I never want to pick should we go to the ER for Liam, or should we wait it out and hope? Unfortunately, in the past we have made that decision. Do we take him to the ER and pay the big amount of money, or do we wait it out?” Matthew said.

They qualified for insurance premium assistance within the week, and they were overjoyed. Through Accessia Health assistance, they were able to upgrade Liam’s plan to include access to emergency room care for the many ER visits he will need. 

“Not having to think about the extra money out of our paycheck that goes to healthcare has allowed us to focus on other issues that have arisen with Liam. It’s taken a little weight off our shoulders and allowed us to just breathe a little more deeply. It was a weight off of us,” Matthew said. “We work with our hearts, and it was just a relief to know that Liam’s medical needs were going to be met and that we’re not going to have to struggle to figure out what’s more important: Liam’s medical needs or having dinner tonight.” 

The family expressed that they wouldn’t have been able to have a second son, Cody, if it weren’t for the assistance they received for Liam’s life-saving treatments. For Liam’s parents, it means the world they can continue growing their family.

“It’s been that diamond in this rough of that Liam is only four years old, but he was diagnosed at four months old, and Accessia Health has been with us for that whole journey. It’s been a blessing, and I just wish more families had access to it because a chronic condition is lifelong,” Matthew said. “We appreciate the support Accessia Health has given us that allows us to continue to do what our calling and purpose in life is. You guys are a miracle!” 

As a parent, Matthew encourages any parent of a child with a rare or chronic medical condition. His main goal is to not allow Liam’s condition to define or limit him from living a rich life, full of joy and opportunity. To the parents out there, he reminds you that you’re not alone. 

“The days are long, but the years are short. That’s been my motto. It’s going to be a journey, but you’re in this together,” Matthew said. “Love your kid as much as you can because the world is hard. The more love you can give, the more love they can share.” 

Giving Back and Giving Hope 

Liam’s family receives insurance premium assistance through our Hemophilia patient program, and this wouldn’t be possible without generous support from caring people like you. 

You can change a patient’s life by donating to our patient programs. Click here to make a gift today.

 

*Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything you may have read in this blog, on this website or in any linked materials contained within. Thank You.