A Mother’s Story of Thanks
By: Mindy Mooney
About four days after my son Corrigan was born, he began having seizures and showing other signs of distress.
Corrigan was diagnosed with a rare genetic Urea Cycle Disorder. Two treatment options were available: a lifetime of severely restricted diet and strong medications or an organ transplant. His medical team felt that diet and medication would be the best course of action and we hoped it would be enough to manage Corrigan’s illness.
Sometimes, diet and medications weren’t enough to prevent a crisis, though. During a crisis event, Corrigan’s body flooded with brain damaging toxins. Rescue medication would stop the crisis, but each event left him depleted.
Fear of not catching a crisis in time - which would result in Corrigan suffering from more severe brain damage, coma, or death - constantly hung over us. Simple things like a common cold, daily stress, too much exercise or even growing would trigger these events, wreaking havoc on Corrigan’s system.
For ten years we navigated this precarious balancing act, until puberty threw Corrigan into metabolic instability. After five crisis events in four months, transplant became the only option to save his brain and his life.
Healing came in the form of a lifesaving liver transplant, but brought with it a new hurdle. Transplant protocol required that we not live more than an hour away from the hospital while Corrigan’s body adjusted to his new organ. Willing to do anything to save our son’s life, we agreed, despite living 2.5 hours away from the hospital.
We couldn’t afford to rent a home or stay in a hotel nearby. If not for the Ronald McDonald House of Washington, DC, we would have had to sleep in our car for two months.
The first time we visited the Ronald McDonald House of Washington, DC, it just felt like home.
Life is ugly and beautiful. Sometimes in the same 24 hours. Sometimes hourly. I don’t understand why we have so many ugly parts in ours compared to others but I’m so incredibly thankful for the beautiful ones. And I’m so thankful for Ronald McDonald House Charities of Greater Washington, DC, just 5 miles from the hospital.
The Ronald McDonald House allowed my husband to go “home” each evening and sleep in a bed, instead of the cot in Corrigan’s hospital room. He could shower, grab food lovingly prepared by volunteers, regroup, recharge, and return to us the next morning bearing coffee, breakfast, and the smile we all needed to keep going.
The first time Corrigan was released from the hospital after his transplant, he was on 16 medications and it was more overwhelming than taking him home as a newborn. It was such a relief to be at the Ronald McDonald House, just 5 miles away from his medical team.
Thanks to a generous organ donor, my son’s life has been changed in so many ways. Corrigan no longer has to be careful about what he eats and I no longer have to fear germs or viruses or outdoor activities that might have burned up too many calories for my boy!
Corrigan’s journey taught us to never give up hope. Hope for a better day, hope for another smile, hope for tomorrow. Ronald McDonald House Charities of Greater Washington, DC gives families like ours a place to find strength, comfort, and hold on to our hope. Thank you for your support.