In March 2018, five-year-old Riley got a fever that just wouldn’t go away. Initial tests came back negative, but when the fever still persisted, her family knew something was wrong. After lots of bloodwork, testing confirmed that Riley had Fanconi anemia, a very rare genetic disorder.

This was a life-changing diagnosis for Riley, her mom, Tina, and her brother, Casey. The outlook for a child diagnosed with Fanconi anemia was very scary for the whole family.

One of the first things that happens with this disease is bone marrow failure. To prevent this, many patients undergo a bone marrow transplant. Tina discovered the experts at Cincinnati Children’s and knew that was where her daughter would receive the best care.

Tina, Riley and Casey traveled from their home in Dallas, Texas, to Cincinnati in July 2018 for preliminary testing. Doctors told Casey and Tina that they weren’t strong enough matches for Riley so they needed to wait until a match was found in the national bone marrow registry before a transplant could be performed. It was June 2019 before they returned to Cincinnati to start the process.

Going through a transplant is an incredibly difficult time for the patient and the family. It’s a physically grueling process for the patient and an emotional roller coaster for a parent to see their child on so many drugs and to know that any sort of germ could be life-threatening. Unfortunately, for Riley and her family, her body was very resistant to the transplants. She had to go through the process not once, not twice, but THREE times before it was successful.

While Riley and her family faced this challenging time, Tina explained how our House made a difference:

“The helpful part is that you can come here to eat, to shower, etc. That was immediately helpful to get a few moments of quiet. It was huge. It’s so nice to be so close to the hospital. I could spend time with my son, too. Casey and Riley are close in age. The hardest part for them was that they really missed each other. When she had zero immune system as transplants were failing, it was 65 days before they could hug for the first time again. They could only wave through a door.

The best part about being at RMH would be the people. Everyone is lovely. I ask the front desk for help and they don’t forget. Having two hot meals a day, lots of snacks in the kitchen and the commute to the hospital can’t be beaten.”

Riley hopes to go home before the end of the year. She has seen friends that she met here get to go home, and she can’t wait for it to be her turn.

Be the reason Riley and children like her have their family by their side.

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