Kevin and Maura Ryan experienced heartache when their first child, Lucy, was diagnosed with a rare mitochondrial disease that severely impacts her physical development.
To make matters worse, their third child, Winnie, born five years later, has also been diagnosed with the disease.
To support the family from Mt. Greenwood, Rally 4 Ryan Sisters will be held on Nov. 3, from 2 to 7 p.m., at 115 Bourbon St., 3359 W. 115th St., in Merrionette Park.
Both Kevin and Maura are carriers of the disease but had never heard of it before having children.
Kevin’s cousin, Dan Ryan, is still perplexed that both children were diagnosed.
“To have two children suffering from it is unheard of,” Dan said. “It’s just bizarre it happened the way it did.”
Tickets to the fundraiser are $40 for adults, $10 for children, with attendees 5 years or younger admitted for free. The event will include five hours of open bar, a buffet and entertainment from The PriSSillas, who are a Chicago-based cover band, and The Dirty Wellies, an Irish band that will perform songs written about the two girls.
Lucy, 7 and Winnie, 2, received copies of a mutated FDXR gene from both parents, also known as autosomal recessive inheritance. Their brother, Declan, 5, is a carrier but does not have the condition, which affects mobility, strength and immunity.
Mitochondria in cells are responsible for producing energy, and when they fail, organs, muscles and tissues are affected.
According to experts, one in every 5,000 people has a genetic mitochondrial disease. No cure is available, but treatments can slow progression of the disease.
When Lucy was 2, the family said, her parents noticed she had developmental delays, including poor eyesight and a lack of coordination. She was diagnosed after many tests and evaluations, and her condition worsened.
A battle with the flu hospitalized her for a week, as her immunity is weakened. She has been unable to walk on her own since that illness, and she is now legally blind and beginning to lose her hearing.
Dan Ryan said Lucy can only see “prisms of light.”
In 2017, when Maura Ryan was pregnant with Winnie, the family received genetic-testing results that showed Declan did not have the condition—and they were also told there was a 25-percent chance Winnie would have it.
Winnie was diagnosed after birth, the family said, and she isn’t walking yet and is also experiencing vision problems.
As the girls grow older, their frustrations mount. Dan Ryan said Lucy grows angry wondering why she can’t run like her little brother.
“It’s such a debilitating disease,” Dan said. “Little kids want to go run around and be outside and not be having to deal with this.”
Proceeds from the fundraiser will go to various medical expenses, including therapy costs, equipment such as a wheelchair, hearing aids and a vision magnifier, and costs to travel around the country for appointments with medical experts.
The family has to live in the city because Maura, a graduate of Queen of Martyrs Elementary School and Mother McAuley High School, is a Chicago Public Schools teacher. Supporters would love to help the family build a new home in Mt. Greenwood that is more handicap accessible, featuring wider doorways and track systems to assist with mobility.
Kevin, a native of the Scottsdale neighborhood, is an operating engineer with Local 399. Life is difficult, but friends and family admire the couple’s perseverance.
“It’s very taxing,” Dan Ryan said. “If it had to be two people, they can handle it. They’re just smart people. They’re very kind people. They will always go the extra mile for others, as any of us would.”
The fundraiser includes a raffle with a grand prize of a trip to see the Chicago Bears play the Oakland Raiders in London on Oct. 6, and the winner was selected on Aug. 17.
The second prize includes four tickets to a Bears game this season along with a one-night stay at a downtown hotel and dinner at a downtown restaurant, and the third prize is four tickets to a Bears game.
Dan Ryan said 11 people are on the event committee, and they meet every two weeks.
They’re doing whatever they can to attract the biggest crowd possible.
“We have a great group of people,” Dan said. “Everyone brings a little bit of their profession to the table. Things are working out really well.”