April is National Donate Life month, so I plan to share stories from people we have met on our journey with the Casey Williams Foundation.  Gillian and Grace Irons are two of the toughest little girls I have ever met, Gillian is 11 and Grace is 7.  They live in Maroa, IL with their parents, Mike and Leslie.  Through the years, we have watched them face set backs and successes with their genetic kidney disease.  Gillian has been on dialysis daily for two years, waiting for her second kidney transplant, and Grace has just recently undergone her first kidney transplant.  I asked their mother, Leslie, to share with me about their experiences…

What is the hardest part of dealing with kidney disease?

The hardest part for Mike and I is we never know what tomorrow is going to bring. The girls can be great one day and the next in the hospital. It’s scary having to live life day to day like that. The hardest part for the girls is they’ve missed out on so much of their childhood, especially, Gillian. She’s been on dialysis for 2 years now. She can’t eat the foods kids like, go to sleepovers, or play the game of soccer that she loves. It’s also been an emotional roller coaster for them, trying to figure out “why me”.

What would you like people to understand about people with kidney disease?

People with kidney disease are always told you look so great. Kidney disease is an invisible illness. Just because they look good doesn’t mean they feel good. Kidney disease causes nausea, low weight gain, and major loss of energy.

What would you like to share about the process of organ donation?

I can’t say enough great things about organ donation. It gives the gift of life. What can be more important than that?! For Gillian it will mean sleepovers, no dialysis, eating what she wants, swimming, and much more. For Grace, she feels better, she’s starting to slowly grow (finally), she’s eating the foods she wants. Who knows what the future can hold for my girls because of organ donation?

While organ donation does not cost the donor family, the expenses of a lifelong illness, like kidney disease, are great.  Thankfully, donors can give to COTA, the Children’s Organ Transplant Association.  This organization helps fund the necessary medical expenses and living costs for families with children going through the process.  When I asked Leslie what expenses COTA will cover, she shared that they pay for anything kidney related; dialysis, appointments, procedures, surgeries, and medications.  They also pay for food, hotel and any other travel expenses.  You see, when a transplant has happened, the fight is not over.  There are doctor visits, hospital stays, and extremely expensive anti rejection medicines.  Many of these doctors are located in large cities, so many families have to travel to appointments, and stay for extended periods of time.

Until we began our work with the Casey Williams Foundation, our family did not understand the ins and outs of donation.  We didn’t realize all of the ups and downs these people have to face.  The families that support people going through the organ donation process have to work and fight almost as hard as those receiving the organ transplant. Leslie is a warrior.  She works so hard to maintain some kind of normalcy for her girls.  She fights insurance companies, advocates for her girls with doctors and nurses, schedules appointments, and fits in time to volunteer with Life Goes On and show up to the CWF events.  Meeting people like the Irons Family has changed how I look at life.  I still sometimes take for granted that I can go to work everyday, that my child can have vaccinations, that we don’t have to worry about the common cold putting one of us in the hospital, but when I see how strong Gillian and Grace are, and how hard they fight for a piece of a normal life, my focus changes.

Please, consider donating to the COTA account for Gillian and Grace, go to COTAforTeamIrons.com.  If it is on your heart to become a living donor, call Barnes Transplant center at 314-362-5365 ext. 4.  You can also follow the Irons Family on Facebook at Keeping it “renal” with Gillian & Grace.  Please, keep this amazing family in your prayers.