Lucy & Winnie Ryan
Sisters with rare form of mitochondrial disease. Their story: https://www.facebook.com/OneForTheKids/videos/1263551340924118
About the Ryans:
Kevin Ryan (Local 399 Building Engineer) & Maura Cahill (CPS Teacher) live in the Mt. Greenwood neighborhood of Chicago, IL. They have three beautiful children: Lucy, Declan, and Winnie (RIP). Kevin grew up in the Scottsdale neighborhood, attending St. Bede’s, St. Rita High School, and DeVry University. Maura grew up in Mt. Greenwood, attending Queen of Martyrs, Mother McAuley High School, and Northern Illinois University. They married in 2010 and eagerly started a family.
Kevin & Maura were so excited to welcome their first child, Lucy Claire, into the world in 2012! When Lucy was two years old, they started to notice developmental delays, struggles with eyesight, and lack of coordination. Lucy underwent years of medical tests and evaluations to find the source of her problems. Meanwhile, their second child Declan Patrick was born in 2014. Although he had vision problems, Declan did not have the same symptoms as his big sister. In 2017 while Maura was pregnant with their third child Winnie Maureen, they received the devastating results of extensive genetic testing. It revealed Lucy had "mitochondrial disease"- a condition they had never even heard of - with an extremely rare mutation of the FDXR gene. While Declan does not exhibit the same symptoms as Lucy, he is a carrier of the gene. After Winnie's birth, it was confirmed that she had the same disease as Lucy.
When Lucy became sick with the flu, she was hospitalized due to her weakened immunity. The virus impacted her mobility such that she was no longer able to walk on her own and is wheelchair-bound. This disease also affected her optic and auditory nerves, resulting in Lucy being legally blind and with great hearing loss.
In late 2022, Winnie contracted a common virus. Due to mito disease, her weakened body could not fight it. She was in the hospital for 3 months and also diagnosed with Guillain-Barre syndrome. The illness affected her systems and organs. Winnie never recovered. She was sent home on hospice with a feeding tube and pain management to keep her comfortable. Winnie passed on Feb 29, 2024 at home in the loving arms of her parents.
What is Mitochondrial Disease?
Mito disease occurs when a child does not receive a normal pair of genes from the parents; rather the genes have 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.
At the time of their diagnosis, there were only about 20 documented cases of FDXR mutation in the world. Due to lack of funding and research, this devastating disease is not well understood. For more information about mito disease, visit www.umdf.org
How your donations help:
Kevin & Maura face numerous medical expenses due to hospital stays, testing, diagnostics, and treatments as well as physical, occupational, speech and vision therapies. Lucy requires a wheelchair, hearing aids, vision magnifier, gait trainer and other aids. As she grows, equipment must be replaced and necessities will evolve.
Medical experts in mito disease are NOT in the Chicagoland area. Lucy's local doctors consult with subject matter experts at the Children's Hospital of Philadelphia (CHOP). Lucy's physical state and weakened immunity makes travel difficult and risky. Therefore, expert care is a real challenge.
Our goal is to raise money to sustain their evolving needs and support two dedicated parents who work tirelessly to provide for their family!
(Photo above of Rally4RyanSisters board members. Not in photo: Bernadette Cahill Fitzpatrick.)
Thank you OFTK, Curve Ball 2023!
Thank you to "One For The Kids" for choosing the Ryan family as a beneficiary at their annual Curve Ball! Thanks to all who donated or helped! Although Winnie was not able to attend, Lucy danced the night away! Photos below. https://www.oneforthekids.org/2023-curve-ball-recap/
Thanks to ALL who have supported the Ryans! They include:
Thank you, Mulliganeers!
The Mulliganeers is a non-profit 501(c)3 organization dedicated to raising funds for children and families in need. This wonderful organization raised funds to help Kevin and Maura provide for their family! https://www.mulliganeers.org/
Thank you, Make-A-Wish of IL!
In 2019, Lucy was granted a magical trip to Disneyworld where she met all of her favorite Disney princesses! They stayed at "Give Kids The World Village", which offers special accommodations and support to persons with disabilities. In 2023, Winnie was granted the same amazing wish and the Ryans returned to Disneyworld! https://wish.org/illinois
Thank you, Clancy's on 95th St!
Thank you, Clancy's on 95th St!
SALLYFEST is Clancy's major fundraiser in honor of Sally Foy, who worked tirelessly to raise hundreds of thousands of dollars for charities before succumbing to cancer. The 2023 fest raised funds for Lucy and Winnie Ryan with the help of The Mulliganeers! https://clancys95th.com/
Thank you, walkers!
Thank you, St. Mary School!
Thank you, Clancy's on 95th St!
Friends and family have donated and/or walked for Lucy & Winnie in the annual UMDF Energy For Life Walk. Thank you to Anne Simonsen Melchior for her leadership! https://www.umdf.org/energy-for-life/
Thank you, Squirt Nation!
Thank you, St. Mary School!
Thank you, St. Mary School!
Led by Kevin's friend Tim O'Neill, this great bunch of local guys hosted a golf outing in 2022 to raise funds for Kevin‘s family!
Thank you, St. Mary School!
Thank you, St. Mary School!
Thank you, St. Mary School!
After winning the "penny wars" during Catholic Schools Week 2023, St. Mary School in Riverside, IL donated their winnings to Lucy and Winnie. Amazing! https://www.stmaryriverside.org/
Thank you, South Side Bar Crawl!
These dedicated organizers hosted a Santa (and Easter Bunny) costume bar crawl to raise money for Lucy & Winnie. Thanks to all who attended and donated.
Thank you, Roche Foundation!
The Jack "Coach" Roche Foundation made a donation to Lucy & Winnie. Jack was a local resident and student of St. Catherine of Alexandria, Marist High School, and the University of Kansas. He was tragically killed in a traffic accident in 2020. https://www.coachrochescholarship.com/home
Thank You, Beth Lynch McCue!
Beth Lynch McCue (yellow shirt) is the sister of Ryan and Bear Lynch, good friends of Kevin Ryan. She ran the Chicago Marathon on Oct 8, 2023 for Sallyfest in honor of Lucy & Winnie! Beth's employer matched the total amount! We are grateful to the Bank of America for their contribution!
Thank you, Snap Fine Motor!
Snap Fine Motor are pediatric Occupational Therapists that have used their expertise to create kits that target developmental play for toddlers to school age children. www.snapfinemotor.com
Thank you, young friends!
Thank you, young friends!
So many children and young people in the community have reached out to help Lucy & Winnie in their own ways (lemonade stands, etc.) They are awesome!
How you can help:
Donations are accepted at:
Venmo: “Rally For Ryan Sisters Ryan” @Kevin-Ryan-226
Zelle: rally4ryansisters@aol.com
PayPal: click button below
Social media:
Facebook: Rally 4 Ryan Sisters
Instagram: @Rally4RyanSisters