It never ceases to amaze me what an act of kindness can do for another human being. Whether it is a small act such as treating the stranger behind you to a cup of coffee at your local coffee shop to something literally life-saving like the story I am sharing with you today. This is a story of hope, sacrifice, and friendship between two families coping with Cystinosis, a rare, genetic metabolic condition that affects every cell in the body. Jessica DeDio’s son Bailey has Cystinosis. Bailey’s kidneys were failing and the family was using social media as a way to alert friends about Bailey’s urgent need for a transplant, specifically through the Bailey Believes – Donate Life page on Facebook. Within minutes of a new Facebook page update, Jessica received a call from Mary Jordan, whose son, Joey, also has Cystinosis. Jessica and Mary had met several years ago at Stanford, where their sons were both participants in a study for a drug commonly used to treat Cystinosis. Bailey and Joey had also hit it off immediately, and are now best friends; brought together by this ultra rare disease.
Mary excitedly reported that her blood type matched what was required and that she could be Bailey’s donor. Just like that; no hesitation, no second-guessing. After more testing at UCLA confirmed Mary as a qualified donor, surgeons removed one of her kidneys and transplanted it into Bailey about a year ago. Today Bailey and Joey are doing terrific! A family friendship born out of a shared health crisis led to this life-saving transplant.
We had a chance to speak to Mary Jordan and Jessica DeDio about their journey and how we can help bring awareness to this rare condition.
Tell us about the journey of Bailey’s symptoms and diagnosis.
Mary: My immediate reaction to finding out that I was a match to Bailey was relief and happiness. His family had had many people tested as well as Jessica. For many reasons they were unable to donate. I called Jessica while they were at their fundraiser “Bailey Believes” for cystinosis. That is the rare genetic disease my son Joseph and Bailey have. Jessica started crying , which led to me crying. We were both so happy. Later on I was a little worried about who would be there for my four children when I was in LA. My husband and I worked it out. Overall I knew it was the right thing to do.
Jessica: Bailey was born with Cystinosis Disease, A Fanconi Syndrome but we did not know it yet. Bailey started to show signs that something was terribly wrong around 12 months old. Bailey would NOT eat anything, losing weight, not growing, Rickets, projectile vomiting multiple times per day and dying of thirst. The doctors could not figure out what was wrong with Bailey, I was losing him, he was dying right in front of my eyes and no-one could tell me why? Bailey was hospitalized a lot, lots of appointments, blood draws and mis-diagnosis and then finally after 5 long mentally exhausting months Bailey was diagnosed with Cystinosis Disease, A Fanconi Syndrome at 18 months old. I remember that day like it was yesterday that was the day I was told my son had an incurable rare disease called Cystinosis and he would not live to see his 10th birthday. Today Bailey is 17 years old and takes 85 pills per day to stay alive and eye drops 10 times a day to keep from going blind. Bailey received the gift of life (kidney transplant) from our HERO Mary Jordan in January 2014. The kidney transplant will NOT stop Cystinosis but it will definitely give Bailey a better quality of life, a life free from dialysis. From the outside Bailey does not look he has a deadly disease, but on the inside Cystinosis is wreaking havoc on his precious body. With Cystinoisis the cystine in body does not get properly removed which means the cysteine build up all over his precious body and is and will continue to shut down each and every precious organ, eyes, bone marrow, and intestines and will eventually lead to death.
What are ways people can get involved to get the word out about Bailey Believes?
Mary: Others can get involved in organ donation by donating to various groups, putting the donor sticker on their licenses, and thinking about being a live donor. You only need one kidney to live a normal life. Some organizations include: Donate Life America, Organ Donor.gov, American Transplant Foundation, and Global Organization for Organ Donation. You can also call a hospital where they perform transplants and talk to the transplant team.
Jessica: We are having our 4th Annual Bailey Believes Dirt Bike Ride for a Cure on November 7th, 2015 in beautiful California City. The donation of $50.00 which includes a ceremonial fun Dirt Bike ride, lunch, T-shirt, Bracelet, live Music, DJ & Karaoke. Most people come out and camp for the weekend and have lots of fun! We will also have a raffle and auction with amazing prizing. Please visit www.cystinosisresearch.org/donate-for-bailey and follow us on Bailey Believes-Donate Life page where you can find updates on Bailey and the 4th Annual Bailey Believes Dirt Bike Ride for A Cure. We are looking for donations and Gifts-in Kind for our raffle and Auction. 100 % of all donations go directly to the Cystinosis Research Foundation to find better treatments and our wish and dream a cure for Cystinosis.
Response from Cystinosis Research Foundation
As a community, we are surrounded by people we know and people we just met who have embraced our children and community and have committed their time, energy and resources to help us find a cure for cystinosis. Simply put, we could not have achieved what we have without the support of others.
It has taken all of us uniting for a common goal – to find a cure for cystinosis – to ensure that the research moves forward. We have an abundance of hope because our researchers and scientists have dedicated their lives to finding a cure for our children. Without the plethora of research CRF funds, we would have no reason to believe that better treatments and a cure could be found. CRF is the only foundation in the world funding millions in new research grants every year. CRF is the lifeline that keeps the cycle of cystinosis research dynamic and thriving.
Since the formation of the CRF in 2003, and directly because of our donors and community support, we now have the first donor stem cell transplantation trial open at UCLA; CRF has funded every bench and clinical trial that led to the discovery of a delayed-release medication, which was approved by the FDA in 2013; and we have learned more about the pathogenesis of cystinosis and we are on the brink of two new treatments. When we talk to our children about the future, we talk about hope. The research CRF has funded gives us hope that a cure will be found.
Ways we can help as a community:
Send items that can be used to raise money for their November 7th Bailey Believes – Donate Life fundraiser. I believe any new item that could be used for their raffle auction would be wonderful! We plan to send over some signed books!
See if becoming an organ donor is something you might want to do. With my father’s passing there was some comfort knowing that over 50 people were helped and lives were saved because he was an organ donor. People suffering from breast cancer to bone cancer and burn victims were helped with his gift. He would have been pleasantly surprised by how many people he helped by doing this act of kindness.
Here is more information about the fundraiser:
Please visit www.cystinosisresearch.org/donate-for-bailey and follow Bailey Believes-Donate Life page. They are looking for donations and Gifts-in Kind for the raffle and Auction. 100 % of all donations go directly to the Cystinosis Research Foundation to find better treatments and cure for Cystinosis.
Have you ever thought of becoming an organ donor?