Celebrate Cri du Chat Awareness Day

My first daughter was born on April 16th, 1993. Jocelyn’s early arrival was the first of many surprises she brought. Spending the next 6 weeks in the NICU was not how I had envisioned the start of parenting.

After several visits with specialists and months on a medical roller coaster ride for our NICU baby, it was confirmed Jocelyn had Cri du Chat Syndrome also known as 5P- Syndrome. 

According to NORD the National Organization for Rare Disorders, Individuals with Cri du Chat often have a cat-like cry in infancy, slow growth, developmental disabilities, distinctive features and a moderate to severe intellectual disability.

This news was devastating. Because enough time has passed, I can honestly say for me, that initial feeling stays. However, other emotions emerge. Love, pride and contentment replaces doom and gloom. Finding beauty in the world, watching Jocelyn laugh, becoming an advocate and appreciating the little things in life, all help.

Most importantly it is comforting to know that individuals with Cri du Chat have shattered developmental expectations, are happy, participate in meaningful activities, enjoy the love of family, friends and engage in social interactions. All characteristics of the diagnosis are rarely present and definitely do not define the individual. Individuals with Cri du Chat are unique. We are all unique.

Jocelyn is unique, too. Jocelyn is friendly, curious and enjoys interactions with others. She loves horseback riding, splashing in the swimming pool and spending time with family.

Join me in celebrating International Cri du Chat awareness week the first week of May and International Cri Du Chat awareness day May 5th.

-Colleen (mom of Jocelyn)