A Family’s Journey

Phoenix Dolopei was six months old when she was diagnosed with Cri du Chat, a rare genetic condition also known as Five P Minus (5P-). Her mother, Kathleen Howell, describes going through the stages of grief when Phoenix was diagnosed, especially after being told by a genetic specialist that Phoenix would never walk, talk, or feed herself. Kathleen was forced to re-examine, release, and reform the hopes she had for her daughter.

Kathleen did her best to educate herself about Cri du Chat syndrome. The internet was a useful resource, but it also provided a lot of unwanted gloom and doom. Kathleen made some very conscious choices about how she could best cope and provide the most valuable support for Phoenix. First, she turned away from the negative stories she had been seeing online. She also decided that she and Phoenix would need to be closer to family, which meant moving from Charlotte, NC, to Atlanta. And she wanted Phoenix to be at a facility that was inclusive and could address the needs of her child. Through a Cri du Chat family support group on Facebook, Kathleen was connected with the Child Development Program Director at the Frazer Center. Phoenix was put on a waitlist, and Kathleen took a leap of faith and moved her family to Atlanta. After a year and a half, Phoenix was admitted to Frazer.

Phoenix got her mom to go down the slide with her.

Phoenix turns 5 in December. Over the years, she has worked with physical, speech, play, and occupational therapists. Since coming to Frazer, Phoenix has learned a lot of self-help skills. She can now eat with a spoon and use a regular cup. And she is fiercely independent about her style. She picks out her own clothes and dresses herself.

In spite of that early diagnosis, Phoenix can walk, run, and play with her classmates. Although she continues to develop her verbal skills, her biggest frustration is not always being able to find the words she wants to express herself. But her classmates are learning from Phoenix too. According to Kathleen, that has been the greatest gift—the inclusive environment at Frazer helps teach all children about empathy. “I see it daily. The kids help Phoenix and love her.”

Through her own determination, with the guidance of her mother, therapists, and teachers, and with a little help from her friends, Phoenix is thriving.

If you would like to learn more about Cri du Chat/5P- syndrome, please visit www.fivepminus.org.

Phoenix is driving this time.