Chloe’s World Opens with Expert Care

I didn’t know what to expect when I had my twins Chloe and Morgan. I thought their development would be similar, but it was so different. Chloe screamed in pain when I gently extended her arms or legs to play or dress her. When they started to crawl, Chloe only used her elbows to pull herself and never got on her knees.  She seemed to do things at a slower pace for comfort.

 

She struggled to move her limbs over time, and her pediatrician referred us to Children’s National Hospital. We first went to the rheumatology department. They thought she could have juvenile arthritis, but that did not explain her misaligned joints and cysts.

 

When Chloe was 3, we went to the genetics team and did more extensive testing. They confirmed she had Farber disease, a very rare autosomal condition. They had only seen one case at Children’s National before. She was one of 22 diagnosed cases in the United States at the time. I relied on our doctors for any information and guidance, due to the little amount of published information at the time.

 

As a parent, I just wanted to take away her pain. I wanted her to be able to stand without hunching over to walk. I wanted her to feel like she could interact with Morgan instead of sitting out of everything. I wondered, “What will her quality of life be like? How will I protect her?” 

 

We entered clinical trials and tried different medications. She started going to physical and occupational therapy. Her team coached her to open her hands and support herself without using her knuckles. They trained her to stretch her limbs, which had locked from inflammation. It was remarkable to see Chloe’s progress, knowing it came from a place of trust. They were small hurdles, but big in my eyes.

 

Chloe had potential matches for a bone marrow transplant. But during the pandemic, that list shrunk. Her chances became scarce. We tested everyone in the family. My sister Catia and my youngest daughter, Neriah, turned out to be half matches. 

 

When Chloe was 6, my sister donated stem cells from her bone marrow, but the transplant failed. It was one of the scariest moments of our lives. I saw Chloe’s frail little body in the bed, barely 30 pounds, and thought, “What now? How can she go through this again?” But I knew it would save her life. 

 

Neriah, at age 2, was her second donor. The idea of having two of my children undergo medical procedures of this magnitude on the same day was unimaginable. I promised Chloe that I would never leave her during this process.  The nurses assured me that someone would always be with each of them. They even found one remaining corded phone in the hospital so that Chloe could call me from her bed upstairs, and I could give her updates on her little sister.

 

When the time came, they had a “stem cell party.” Chloe and Neriah stood up and pushed the start button together to begin the transplant. They hugged and sat on the bed together. Over the next month, Chloe got stronger and was discharged, with her nurses clapping and cheering her on. 

 

Chloe went to school for the first time in person, greeted like a rockstar, and participated in her first field day, with help from her big sister Loren. She has still faced setbacks, including an infection, but she is tougher than anyone I have ever met. Chloe never ceases to amaze us to see how far she has come, thanks to her care team for showing us a way forward.