'Rally 4 Ryan Sisters' Helping Young Girls With Rare Disease

CHICAGO — Experts say there are only 17 people in the world who live with a certain rare form of mitochondrial disease. Two of them are young residents of Chicago's Mount Greenwood community.

Lucy and Winnie Ryan are sisters. Both were born with the extremely rare disease and face severe difficulties. Lucy, 7, is now legally blind and is starting to lose her hearing. She lost her ability to walk after falling ill with the flu one year while doctors were still working on finding a reason for her developmental delays.

At age 2, Winnie is not yet walking, developmentally delayed and shows similar signs of the disease Lucy had at the same age.

The sisters come from a family with strong ties to the South Side. Their dad, Kevin Ryan is a Local 399 building engineer who grew up in the nearby Scottsdale neighborhood, attended St. Bede School and then St. Rita High School. Their mom, Maura Cahill Ryan, a Chicago Public Schools teacher, is from Mount Greenwood and went to Queen of Martyrs and Mother McAuley High School.

It's the extended family that's putting together an effort to get the sisters help. The first "Rally 4 Ryan Sisters" fundraiser is already set for Sunday, Nov. 3 at 115 Bourbon Street. Dan Ryan, a cousin, says the family's current home is not suitable to their needs.

"The money we raise would go toward putting new ramps in at their Georgian-style home or building a new home," he said.

The rare form of mitochondrial disease Lucy and Winnie face is only documented in three other cases in the United States. Both Mount Greenwood girls have the FDXR mutated gene, which can only occur when both the mother and father are carriers.

From the Rally 4 Ryan Sisters webpage:

Given the rarity of their condition, medical research is in its infancy. Doctors just don’t know. This leaves Kevin and Maura with many unanswered questions and an uncertain future.

The girls's brother, 5-year-old Declan, is also a carrier but does not have the mutated gene.

"This is really unheard of," Dan Ryan said. "So a group of us wanted to put something together to help them out. The parents are both full-time workers and the family has done a lot for others."

Tickets for the Nov. 3 rally are $40 for adults, $10 for children and free for those 5 and younger. The adult ticket includes 5 hours of open bar, a buffet and entertainment. The child ticket covers food, drink and face-painting.

But before that, Lucy and Winnie will be at Bourbon Street on Aug. 17 pulling the winning ticket of the grand prize raffle, of which the top prize is a trip to London for two to see the Chicago Bears play against the Oakland Raiders on Oct. 6.

Email Dan at Rally4RyanSisters@aol.com to buy one of the few remaining raffle tickets.

"You'll be supporting a good cause — two young girls in need who have had a rough hand dealt to them," Dan said.