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Two Acadiana girls battle rare disease - KATC.com | Continuous News Coverage | Acadiana-Lafayette

Two Acadiana girls battle rare disease

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Two Acadiana girls battle rare disease Two Acadiana girls battle rare disease

Infantile Neuroaxonal Dystrophy, also known as INAD, is a rare, inherited neurological disorder. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body. It causes progressive loss of vision, muscular control and mental skills. There is no known cure for INAD and no treatment that can stop its progression.

There are only 16 known cases of INAD in the U.S., two of which are in Acadiana.

"Kennedy was born normal," Jennifer Thompson, mother of 12-year old Kennedy,said. "She walked at 18 months. She crawled. She babbled. She talked."

"Olivia crawled on time," Leslie LeMaire, mother of 6-year old Kennedy, said. "She walked at 12 months of age. She started to talk just like any other child."

But at 18 months old, both girls starting regressing and no doctor could tell their parents why.

"At 18 months she started to stumble," Thompson said. "We noticed that her equilibrium wasn't proper. She had walked so good before. We went to a couple doctors who said 'There is nothing we can do. She will grow out of it'."

The same happened for Olivia.

"Then at about 18 months of age, Olivia started falling," LeMaire said. "She couldn't bear weight on her legs anymore."

Kennedy, now 12-years old and Olivia, now 6-years old, were both diagnosed with INAD. They lost their ability to communicate and move.

"I used to ask her "Who do you love?" and she would say 'My mama'," LeMaire said. "That has been the hardest part on me to not hear her say that anymore."

The two families rely on one another during the hard times and are now relying on each other to raise awareness and money for research.

"When a doctor tells you 'I'm sorry there's nothing we can do. You should prepare for the worst. We don't know how much longer she has. Just enjoy every day with her', I don't accept that because there is no research being done," Thompson said.

The families have found someone to research INAD, but they need help paying for it and are looking to the community for help.

"We're fortunate to have a community that can come together to help us," LeMaire said.

Both families are hosting fundraising events in April to raise the $75,000 each year to fund the project.

For more information on the events and how to help visit the families websites: www.ICan4Kennedy.com and www.ICan4Olivia.com.

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