Cecil Picard Elementary student deals with rare disease

Infantile Neuroaxonal Dystrophy (INAD) is a rare genetic neurological disorder that affects only 13 children in the United States.
One of those children, Olivia LeMaire, lives in Vermilion Parish.
Doctors diagnosed LeMaire, a student at Cecil Picard Elementary in Maurice, with INAD last December. Since that time, Olivia and her family have been on a journey.
“Olivia and I have been invited to several schools to speak to 4H students about Olivia and her disorder,” said Olivia’s mother, Leslie LeMaire. “I believe that Olivia has been placed among us for a reason.
“She is precious and so strong.”
INAD affects the axons, the part of the nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills. INAD is the result of an abnormal build-up of toxins in nerves that communicate with muscles, skin, and conjunctive tissue around the eyes. Symptoms usually begin within the first 2 years of life. It is an autosomal recessive disorder, which means that both parents must be carriers of the defective gene that causes INAD to pass it on to the child.
“There is no cure for INAD and no treatment that can stop the progress of the disease,” Leslie LeMaire siad. “Treatment is symptomatic and supportive. Physical therapists teach parents how to position and seat the child, and to exercise arms and legs to maintain comfort.”
Comfort has come from many places in Olivia’s life. Along with her family, Olivia’s school and community have come together. Students and faculty of Cecil Picard Elementary and North Vermilion High recently held a jean day and a penny drive to help with medical expenses for ‘Olivia’s Journey.”
“When I went to talk to students at Cecil Picard,” Leslie LeMarie said, “the sponsor of 4H asked the students that gave money, purchased a shirt, or attended the benefit (held in Rayne on Nov. 2) to stand.
“Nearly every student in the cafeteria stood up.”
That did one thing for Leslie LeMaire.
“This brought tears to my eyes,” Leslie LeMaire said. “As her mother, it warms my heart to know that so many have welcomed Olivia and support her. 4Hers were allowed to go to Olivia’s class every 30 minutes to see how Olivia’s day is and how the Aides care for her. I was told that the students counted down the minutes until they could spend time with Olivia.
“I felt emotional that so many people care and are supporting us in spreading awareness.”
That care also shone through when the staff at Cecil Picard named Olivia the Student of the Month for October.
“Once again I became emotional that the school would consider Olivia for this honor,” Leslie LeMaire siad. “It seems like we are definitely making a difference as everyone seems to look past her disability and see the beautiful little girl that she is on the inside and the outside.”
While most of the children with INAD are spread around the country, Olivia’s family does not have to go far to be with another family in a similar situation. An 11-year-old with INAD lives in Lyons Point, La.
“Our family has become good friends with this family,” LeMaire said.
The visits can be both therapeutic and emotional.
“It is sometimes hard because the 11-year-old is further in the disease and it is emotional for me to see what the future has in store for Olivia,” Leslie LeMaire said. “It is emotional for the other mother because it brings back memories of what her daughter used to do and Olivia is following her daughters progression in the disease.”
Disease or disability can be viewed in a negative light. Not for the LeMaires.
“Instead of feeling like I have been cursed with having a child with a disability,” Leslie LeMaire said, “I feel that I have been blessed that I have been chosen to be the mother of this beautiful joyful child that is changing so many people in a positive way.
“Her smile can light up any room. She inspires so many people with her determination, huge smile, and beautiful eyes.”
It is through those eyes that Olivia views the positives.
“She doesn’t let her disability hold her back,” her mother said. “I speak to the students how our genes make up who we are and we can not change them. It is not Olivia’s fault that she has this disability. She would very much like to be on the other side and sitting with the other students listening to someone else give this speech.
“She may not be able to talk but she can understand almost everything you tell her.”
The message Olivia offers is clear.
“Our message to all children is that different is not bad,” Leslie LeMaire said. “The world would be boring if we were all the same. Everyone is unique in their own special way and when they see someone who is different to interact with that person instead of staring or talking about that person.
“We ask the students not to bully or judge and stand up for someone if they see them as a victim of bullying.”
Olivia will continue that message. She is writing her own story on the Facebook page, Olivia’s Journey.
“We are also planning on doing a walk in April for Olivia’s birthday to continue to spread awareness,” Leslie LeMaire said. “If this goes well we will continue to have a walk every April.”
It was last December when her family discovered Olivia had the rare disease. All these months later, her mother would not change a thing.
“I feel so blessed to be Olivia’s mother,” Leslie LeMaire said. “I wouldn’t change her for anything! She is perfect the way she is!!”