Michelle Weaver: advocating for herself and her daughter

From childhood, Michelle Weaver knew something wasn’t right with her health. She was prone to heavy bruising and bleeding, which frequently caused her to wind up in the hospital and miss school. She endured “terrible” menstrual periods and, later, bled more than usual during childbirth.

Doctors attributed Michelle’s symptoms to her diet, saying she wasn’t getting enough iron and other nutrients. “It was really hard growing up…but it made me the advocate I am today,” she said.

It wasn’t until Michelle was in her mid-30s that the underlying cause of the bleeding became clear. And it came from an unexpected place: her young daughter, Kaitlyn.

At age 4, Kaitlyn had surgery to insert ear tubes and remove her tonsils and adenoids. During the procedure, her eardrums ruptured, and blood entered her airway. “That got everybody thinking something else is going on with this baby,” Michelle said.

The Weavers, who live in Alabaster, Alabama, spent years consulting with doctors all over the country before they got Kaitlyn an accurate diagnosis: Von Willebrand disease (VWD), a rare blood disorder in which blood does not clot properly. Because VWD is inherited, doctors next looked to Michelle and Kaitlyn’s father, Scott.

Michelle was diagnosed with the most common type of VWD, which explained her lifelong bleeding problems. Kaitlyn, however, has a more severe form of VWD resulting from a genetic mutation that hasn’t been typed yet. The now 18-year-old lives with multiple other health conditions including a second inherited blood-clotting disorder, juvenile arthritis, and lupus.

“Almost every organ in her body has been affected,” Michelle said. (Kaitlyn’s twin brother, Jacob, does not share any of his sister’s health conditions.)

Life with VWD means constant vigilance, as even seemingly minor injuries from everyday activity can become dangerous. For years, Michelle and Kaitlyn treated their VWD as needed, each time requiring a trip to the ER. It wasn’t enough—they needed to prevent bleeds by regularly replacing the protein that’s missing from their blood.

This medication is not something we just want to have… It makes a difference in our lives—and for my daughter, it’s literally life or death.”

Michelle Weaver

But at thousands of dollars out of pocket, the Weavers’ budget couldn’t cover it. “Do we take out a second mortgage on our house? Do we get a personal loan?” wondered Michelle. “You do whatever you have to do for your kids’ health and your health.”

Then their specialty pharmacy told Michelle about the PAN Foundation. With the help of PAN copay grants, they could get the treatment they need to prevent bleeds—Michelle once a week, Kaitlyn every other day. They require extra treatment before and after any medical procedure, like mole removal or dental work. And they consider themselves lucky because they can receive it intravenously from a nurse who comes to their home, instead of always heading to the hospital. 

Easy access to medication has been a true blessing in emergencies, such as when Kaitlyn needed additional treatment following a life-threatening surgical error in December 2023.  

“[PAN] has saved our lives so many times. If it wasn’t for your grant, she [Katilyn] wouldn’t have been able to get it in time,” Michelle said. “[This medication] is not something we just want to have. It’s not something we wish we could have. It makes a difference in our lives—and for my daughter, it’s literally life or death.” 

At 55, Michelle still needs to be careful to prevent bleeds, but her quality of life has greatly improved with treatment. “I get to go to work and function and be a normal person as much as I can,” said Michelle, who works as the Director of Community Ministries at their church in Alabaster.  

Kaitlyn continues to persevere through her medical ups and downs. Enrolling in online school has been a good fit for this honor-roll student, and she’s on track to finish high school ahead of her peers. She enjoys web design and wants to be an advocate for children who have rare diseases like her.  

The Weavers credit their “faith and all our faithful friends” for keeping the family going. As Kaitlyn likes to say, “God’s got this!”  

“Having a lifelong bleeding disorder is stressful. Parenting a child with a severe bleeding disorder is even more stressful. You look for hope any way you can get it,” Michelle said. 

Financial assistance has taken away some of that stress, now that mother and daughter don’t have to worry about how to afford their lifesaving medication for VWD.  

“This program is hope,” Michelle added.

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