Fighting for Her Heart
By Michelle Watts, Founder of Avery’s Fight
FH Awareness Day on Sept. 24 has become a very important day to our family. Almost nine years ago our daughter, Avery, was diagnosed with homozygous familial hypercholesterolemia (HoFH), totally by “luck” at age six. I asked our pediatrician to test our children’s lipid levels at a routine checkup. Avery’s total cholesterol test came back over 800! We now know that my husband and I, along with our oldest son, all have the very common heterozygous form of familial hypercholesterolemia (FH). HoFH is much more severe and is considered a rare disease. Learning Avery had HoFH was, quite possibly, the worst day of my life. I felt like my entire world had just crumbled.
Our life became much more complex after Avery was initially diagnosed, but I don’t think anything could have prepared us for January 2020. At age 11, Avery had her first open-heart surgery to remove plaque buildup and repair her heart valve, both consequences of having HoFH. After about 12 hours in post-op, she started to rapidly decline. She was rushed into an emergency cardiac catheterization and from there straight into a second open-heart surgery, in less than 24 hours from her first surgery. At some point during that time, she also suffered a heart attack. Then, in July 2022, we were unfortunately back again at the hospital for her third open-heart surgery. The days surrounding her surgeries were probably some of the most difficult days of my life — and definitely Avery’s life.
Over the past eight-plus years, we have endured unending medical appointments, tests and procedures, with teams of doctors at multiple hospitals. Avery has missed a great deal of school and activities due to traveling three hours to and from the closest hospital, where they’re able to provide LDL apheresis as well as her drug infusion. Those days end up being exhausting 12-hour days.
As a young preteen, all you want is to be like all the other kids. Watching Avery navigate through all this has been, at times, excruciating, but we’re very proud of how she has fought through adversity.
Then there are the many medications she must take every day for HoFH and the damage caused to her heart. Moreover, the financial impact has had a lasting effect on our family. We know we will be paying off medical bills for her care for a very, very long time. Lastly, I would be remiss if I left out the mental health impact on not only Avery, but our entire family. This is the reality of having a child with HoFH and this is why we, as a family, will continue fighting for Avery’s heart. ♡
Note: Since Avery was diagnosed at the age of six, she has been on lipid-lowering medications (like statins) and has undergone weekly LDL apheresis treatments (to clean her blood of “bad” cholesterol) in addition to now receiving a medication she receives by monthly transfusion.
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For more information on this health topic, visit heart.org.
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