Joanne Picard was born October 21, 1998, and soon grew to be a very happy, healthy, and talkative child. By the age of 2, she began to lose many skills. Joanne went from saying more than 13 words at ease, to barely being able to call for her mom when she was afraid. Joanne could no longer pick up her Cheerios and seemed to not be able to control her hands at all.
Joanne suffers from Rett Syndrome, a rare neurological disorder that affects every aspect of her life, including her motor skills, breathing and speech. "Everyday is a battle for Joanne," says her mom, Simone. "She fights to breathe, to walk, and everything she does takes at least 10 times more energy than it would for us.
One of the most frustrating parts of Joanne’s syndrome is apraxia, which affects motor movements. "There’s a delay between the message from her brain and the physical movement," Simone says. "The more Joanne tries to do something, the more her body won’t let her." It can be so frustrating for Joanne to control her body, especially knowing that there was a time when those movements were so simple.
Joanne also suffers from severe respiratory problems. Her disorder can cause her to stop breathing, and because she is not very mobile, her lungs are not overly strong. As a result, she can not get in enough oxygen, causing her to tire very easily and to be very susceptible to infections.
Joanne has been hospitalized ten times for respiratory infections, including 3 stays in the Stollery Children’s Hospital Pediatric Intensive Care Unit. Today, with the aide of a bi-pap machine, Joanne’s lungs are becoming stronger and she will hopefully be able to fight off infections better. A bi-pap machine helps Joanne inhale and exhale deeper breaths, much like being on a respirator. Joanne wears this mask anytime she is sleeping.
Despite many challenges, Joanne is a regular child stuck inside a body that just won't work. Joanne attends her local school and her favorite subjects are music, gym and recess! She is learning to read, uses pictures to communicate and has a special computer to help with her school work. Joanne loves to ride horses, swim, and play with her friends. Joanne's hearty laugh and infectious smile are a delight for anyone who meets her.
Though Joanne fights incredible odds on a daily basis, she never gives up. Her parents will continue to write letters, make phone calls and lobby in any way they can for the needs of their child. They are always grateful to find organizations or people who are willing to believe in their child and the gifts she has to offer the world.
It is through the generous donations of caring people to "The Angel Fund for Joanne Picard"
Joanne and her family will continue the battle to make every day of her life the best it can be!
Russell T. Dratwa, CIM, CFP