#CLAIREBEARSTRONG

GOAL REACHED!

Claire is a 5-year-old from Coraopolis, PA we’re on a mission to raise
$5,000 for a backyard makeover
where they can make amazing memories together.

Claire is a 6-year-old little girl with Down syndrome. She had a very rough first few years of life enduring two open heart surgeries, spinal surgery, esophageal surgery, and many hospital stays. Finally, things started to become “normal” and uncomplicated when she turned 3. In October 2020, Claire was enjoying her last few days as the “baby” of the family as a newly turned 4-year-old. We had just moved into our new home the month prior, and Claire and her big sister Hailey spent their days exploring their new environment and enjoying their first-ever backyard. However, Claire developed high fevers without any known cause and quickly became very sick. The day before her new baby sister was scheduled to be born, Claire started limping. We took Claire to the ER for the second time that week and this time they did bloodwork. Immediately it was discovered that Claire had leukemia.

Getting the news that your child has cancer can never come at a good time, but the shock of finding out mid-pandemic, 12 hours prior to our baby’s scheduled induction, made it feel impossible to handle. It cannot be described with words how devastating, terrifying, and soul-shattering it is to receive news that your 4-year-old has cancer.

Claire was immediately admitted to the oncology unit and spent the next 6 weeks there.

Due to Covid-19 restrictions, Claire could not have visitors except for her mom and dad. One of our biggest fears at that time was that Claire would never get to meet her new sister. Thankfully, they did meet once the first 6-week hospital stay was over! However, knowing that Claire would only get 3 days home before having to be admitted for another 2 months straight, we made the decision to transfer her care to another state. This hospital allowed young infant siblings to visit. This didn’t completely solve the family separation issues because her big sister was not permitted in the hospital. Still, we eventually rented an Airbnb near the hospital so we could take turns being with all of our children.

The hardest part of the first year of Claire’s treatment was that most of that time was spent, inpatient. Claire was diagnosed with a harder-to-treat form of leukemia and struggled to get into remission for a long time. She stopped walking due to pain issues related to chemotherapy, and she became disinterested in many of the toys and things that she used to love. Thankfully, through a lot of therapy and medications, she is walking again and getting her strength back. Claire spent almost a year indoors stuck in a hospital room and continues to spend a lot of time at the hospital for shorter admissions and clinic visits. Because of her underlying medical conditions and disability, spending time at home is often the most accessible and fun thing for Claire. Currently, our backyard is unsafe for Claire and her sisters to play freely because it is not fenced and has a large drop-off at the end, and this is not something we have had the time or resources to tackle. We would love for it to become a space where Claire and her sisters can spend hours outside playing and enjoying themselves. Claire absolutely loves being outside in the fresh air and exploring things. Memories and photos of her and her big sister playing are what helped us to stay positive during the worst moments and we hope to create many more.

- Jordan Bridge