LaGrange Highlands family seeks the gift of sight
Mirielle St. Arnaud (left), 5, plays with her brother Patrick, 7, in their LaGrange Highlands hom. Both were born with Leber's congenital amaurosis, an inherited retinal degenerative disease characterized by loss of vision. | Rob Hart~Sun-Times Media
How to help
Eat: Save Our Sight Spaghetti Dinner, 4:30 to 7:30 p.m. Jan. 31 at the Robert E. Coulter, Jr. American Legion Post 1941, 900 S. La Grange Road, La Grange, sponsored by the LaGrange Highlands Lions Club. Tickets are $8 for adults and $4 for kids under 13.
Donate: Checks payable to the La Grange Lions Club with the notation S.O.S., PO Box 210, Western Springs IL 60558
On the Web: Visit www.indiegogo.com/patrickandmirielle for the campaign with a matching grant to be donated by the La Grange Lions Club.
Updated: February 25, 2013 6:16AM
LAGRANGE HIGHLANDS — The St. Arnaud’s calendar is packed like the schedules of most young families with busy, happy kids.
“I have a recital this weekend for the variety show,” said 5-year-old Mirielle, showing off silver and blue nails painted to match her skirt for a neighborhood dance.
“Then next weekend is the Daddy-Daughter Daisy Dance,” Mirielle said of a date with her father.
Her brother, Patrick, 7, is equally booked, squeezing in a Saturday piano recital after a Pinewood Derby car race with his Tiger Scout group.
“I’m going to play Tic Tac Toe for the recital, and my car is red and yellow like Lightning McQueen,” from the Disney “Cars” movie, he said.
The children chattered up a storm for visitors in between hugs and cuddles with their mom, Lori. Mirielle delivered a rapid-fire assortment of jokes as Patrick affectionately called his sister a “blabradoodle.”
The family returned home Jan. 14 from a weekend in Boston, but not for a getaway. The children participated in a research study involving Leber Congenital Amaurosis, a rare genetic disease, which affects them both.
Patrick has been blind since birth, and Mirielle has a narrow field of vision deteriorating over time, as a result of the condition.
While nursing Patrick as an infant, Lori St. Arnaud worried her son wasn’t making eye contact and had his vision tested. A devastating diagnosis came from a specialist a few months later and initially offered no course of action, only questions.
But research and contact with a north suburban family has offered hope for a promising treatment. Researchers have identified a healthy gene copy for three of 19 genes causing the disease. When the replacement is injected into the eye, the effects on the retina are reversed.
The St. Arnaud family and community groups have raised $7,000 of a $25,000 goal to fund research on Patrick and Mirielle’s defective gene, NPHP5. The La Grange Lions Club has promised a matching grant of $25,000.
In the meantime, Lori and Lee St. Arnaud have helped their children adapt and live fully, giving them a taste of everything out there. The kids ice skate, go sledding, swim and play adapted T-ball and soccer. Mirielle started playing violin four months ago. The family also has several museum memberships.
Patrick attends first grade at a school in Elmhurst with a program for visually impaired students. Mirielle is in kindergarten nearby at Highlands Elementary School.
“We did a lot of fundraising when Patrick was diagnosed, but put that on hold for a while,” Lori St. Arnaud said. “We just wanted to have fun with the kids.”