Published: Oct 14, 2020
When Avery Watts was 11 years old, she had a heart attack. At age 12, she has already had two open-heart surgeries. She and her family are preparing for her third, scheduled for this November.
When she was only six years old, Avery was diagnosed with a disease called Homozygous Familial Hypercholesterolemia. This disease prohibits Avery’s body from processing and removing LDL (“bad”) cholesterol and it builds up in the body. This often causes heart disease in early teen years and sometimes even in early childhood. Avery also suffers from a congenital heart defect and other cardiac issues that will be addressed during her upcoming open-heart surgery.
The Watts family travel to Nemours/Alfred I. duPont Hospital for Children in Wilmington every week for a procedure called low-density lipoprotein (LDL) apheresis, a life-saving treatment that removes LDL cholesterol from Avery’s blood.
Weekly appointments are not quick and convenient, as the Watts family lives in Hagerstown, Maryland, about two and a half hours from Wilmington. For quite some time, the family would travel, stay at a hotel before Avery’s apheresis appointments, and then drive home. Then a friend told them about the Ronald McDonald House.
Now, the Watts family has been staying at the Ronald McDonald House of Delaware almost every week for six years. They realize that without the House, they would have likely continued to stay at hotels, which would have quickly become a financial burden, only made worse by the large hospital bills they already face.
In addition to providing financial relief, the Watts’ have found comfort and support at the House, especially in the other families who share their “home-away-from-home.” Avery’s mom Michelle shares, “We have met so many people at the House and our children have had the opportunity to meet and speak with people from different walks of life who may speak different languages or have different cultures. Everyone staying at the House has their own situation and is experiencing their own struggles, but we all have children we care about who are sick or need support in some way. It’s comforting to know you are surrounded by individuals who may be feeling similarly due to our difficult situations.”
At the House, the Watts family has been able to make sure the whole family is together. Avery has an older brother and a younger brother, and along with their Mom and Dad, they can stay as a family of five. Michelle shares, “By having the option to stay at the House, we have been able to attend Avery’s treatments as a family. This is just one more thing we do together.”
Although they don’t always all stay every week, especially as the children have gotten older, they have made many memories at the House. “The kids always looked forward to playing downstairs in the big playroom and we especially love coming around Christmas time and seeing all the trees decorated by different organizations and all the holiday lights on the House grounds,” says Michelle. “Now that she’s older and usually only travels with my husband or me, Avery likes picking out a gift from the Treasure Chest — usually a craft to do the next day during her apheresis treatment.”
Last year brought an especially treasured memory: Avery rang the “Good News Bell” when she completed her 100th apheresis treatment.
Looking to the future, the Watts family is excited by a clinical trial for a new medication that Avery is participating in. They hope that with this new medication, they will be able to space out apheresis treatments to only once a month so that Avery can experience life with much less time at the hospital.
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