Rally4RyanSisters

Fundraiser for Lucy & Winnie Ryan

Kevin Ryan (Local 399 Building Engineer) and Maura Cahill Ryan (CPS Teacher) live in the Mt. Greenwood area of Chicago, IL. They have three beautiful children: Lucy (7 years old), Declan (5 years old) and Winnie (2 years old). Kevin grew up in the Scottsdale neighborhood, attending St. Bede’s School, Rita High School, and DeVry University. Maura grew up in the Mt. Greenwood neighborhood, attending Queen of Martyrs School, Mother McAuley High School, and Northern Illinois University. They married in 2010 and eagerly started a family. 

Kevin and Maura were so excited to welcome their firstborn child, Lucy Claire, into the world in 2012. When Lucy was two years old, they started to notice her presenting with developmental delays, struggles with eyesight, and lack of coordination. For several years, Lucy underwent numerous medical appointments, tests and evaluations to try to find the source of her problems. Kevin and Maura were told that Lucy had an extremely rare form of mitochondrial disease, a condition they had never even heard of before. While trying to figure out how to get Lucy the help she needed, her conditioned worsened. When Lucy became sick with the flu, she was hospitalized for a week due to her weakened immunity. The virus impacted her mobility such that she was not able to walk on her own after that, despite repeated physical therapy. This disease has also affected her optic and auditory nerves. As a result, Lucy is now legally blind and is starting to lose her hearing. 

Declan Patrick was born in 2014. Although Declan had vision problems which required surgery, he did not have the same symptoms as his sister Lucy.  
 

In 2017 while Maura was pregnant with their third child, they received the results of extensive genetic testing which revealed that Declan did not have the full mutated gene but was indeed a carrier. It also revealed that their unborn child, Winnie Maureen, had a 25% chance of having the same disease as Lucy. After her birth, it was confirmed that Winnie would be afflicted with the same rare form of mito disease. To date, Winnie is not yet walking, developmentally delayed, and shows signs similar to Lucy at that age. 

Experts have indicated that only about 17 people in the world currently have this rare diagnosis; 4 of them are located in the U.S. including Lucy and Winnie. 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. 

We launched this fundraising endeavor to show Kevin and Maura that their friends, family, and community will not let them go through this alone!

     

Mito disease occurs when a child does not receive a normal pair of genes from the parents; rather the gene has changed (i.e., mutated) or become defective. In Lucy and Winnie’s case, they both received copies of the mutated FDXR gene. This is called “autosomal recessive inheritance” whereby the child receives one mutated copy of a gene from each parent. It affects the mitochondria in their cells.

Mitochondria are the specialized compartments within every cell of the body (except red blood cells) responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function. When they fail, less and less energy is generated within the cell resulting in cell injury, cell death, and organ system failure. 

In other words, Lucy and Winnie's cells do not have the energy to do the things that most of us take for granted. Also, their cells cannot fight off illnesses and recover like most people can. 

The odds of having one child with mitochondrial disease are 1 in 4,000; in the case of FDXR mutation, the odds are much higher. This disease is difficult to diagnose because it affects individuals differently. Further, it can be mistaken for other medical conditions with similar symptoms. Due to lack of research, this devastating disease is not well understood. 

We hope this fundraiser will not only support the Ryan family, but will also draw attention to mito disease and the need for research and funding!

Kevin and Maura face numerous medical expenses due to testing, diagnostics, treatments and hospital stays. Also, they have many out-of-pocket costs for various therapies and equipment not always covered by insurance. Both girls undergo physical, occupational, speech and vision therapies. Lucy requires a wheelchair, hearing aids, vision magnifier, and walker/gait trainer. Winnie will be getting a gait trainer soon and may also need a wheelchair. As the girls grow, the equipment will need to be replaced. 

Unfortunately, the medical professionals with expertise in mito disease are NOT in the Chicagoland area. Therefore, Kevin and Maura need to travel to these experts located around the U.S. The girls’ physical states and weakened immunities makes travel difficult and risky.

Their home is not suitable for the physical needs of the girls, given their immobility and necessary equipment. As the girls age, it will become harder to carry and move them. As such, Kevin and Maura’s home needs remodeling and/or accommodations to meet their needs.

Our goals are to help these two innocent little girls who need constant care, and to support two dedicated parents who work tirelessly to provide for their family!