I got this sweet email today from a 5th grade teacher in Southern California…
You have an extraordinary son. Please know I shared Corrigan’s picture and heartfelt story with my fifth grade class and we prayed for God to continue to watch over him. It is amazing how many hardships he has overcome in his life! His story is truly inspirational.
Earlier this month a request went out looking for stories of children living with Rare Disease. This group of sweet 5th graders wanted to learn about each child’s story so that they could specifically pray for that child during their daily prayers.
If you have been reading here for long, in fact from the very first entry that I posted when Corrigan was first diagnosed, I have always mentioned how much we covet prayers in Corrigan’s name. We have had emails and notes from people of all denominations, from all over the world, in the last 2 1/2 years that have told us that they took a moment to pray for Corrigan’s health, for wisdom for his doctors and for a cure.
A sweet church in Arendtsville, Pennsylvania, keeps Corrigan on their prayer list and sends him sweet handmade cards each and every month to let him know that they are thinking about him. Here is a sampling of the monthly cards that we receive from Trinity Evangelical Lutheran Church.
Thank you so much for your faithfulness to Corrigan’s story!
We have many friends that are not religious but send him good thoughts and check in on us frequently to see if we have any needs that they can meet, offer and ear to listen or a shoulder to cry on, and that is incredibly valuable to us as well.
When times are tough we all just want to know that someone out there cares. Oftentimes people do not know what they can do to help and we always tell them that the fact that they think of Corrigan at all, means the world to us.
For Ms. Jelic’s class, the request was to explain Corrigan’s story in a way that 5th graders could understand (!!! this was hard!!!) and share a photo of the child so that they would be able to see exactly who they were praying for.
Because diseases/disorders like Urea Cycle Disorders are not well-known, opportunities like this are invaluable to the Rare Disease community. Awareness is so important and we relish every chance that we are given to share information with the world.
This is the note (and photo) that we sent the 5th grade class:
This is Corrigan. Corrigan is 2 1/2 years old and has a rare disorder called a Urea Cycle Disorder. To put it simply, everyone’s body needs protein to grow and be strong. Corrigan needs protein too but because his Urea Cycle ( that takes place in his liver ) is “broken” he gets very very sick if he does not take very powerful medicines that help him use the protein but not hurt him. Sometimes those powerful medicines are not enough to keep him healthy and he may need a liver transplant. I have to carefully weigh every single piece of food, and log every drink of liquid, that goes into his body to make sure that he does not go over his “safe” amounts. His “safe” amounts are very small and if he were to eat something high in protein, like a hamburger, it would make him very sick. We have to be very careful to never leave food out because if he ate some food, and it was not calculated, it would be bad news. Corrigan’s has a tube in his stomach to administer medicines, and sometimes food when he is too sick, or just doesn’t want to eat. Corrigan has been in the hospital 13 times in his short life but has had a wonderful stretch of time (18 months now, Praise the Lord!) that he has been stable.
We think that it is so incredibly generous of your class to offer to pray for Corrigan. While we are so thankful for modern medicine, and Corrigan’s team of smart doctors, we know that God is the Great Physician and it is through Him that all blessings come!!!!
The photo that I have sent is one of my favorites of Corrigan. I just love his happy smile, he has no idea that he has a rare and dangerous disorder, he loves life…and we love him so much! In the photo you can see that he is wearing a backpack. This holds his feeding pump that we put on his back so that he can run and play while being “fed” through the tube in his tummy!
Your Friend in Maryland,
Thank you so much Ms. Jelic’s 5th grade class at St. Mary’s! You have inspired me to be more specific in my prayers and to learn more stories about other children that are living with Rare Disease!
If you would like to send Ms. Jelic’s class your child’s story please email Nicole Boise at email@example.com.
Finally, I have some very sad news. Not long ago I posted “A Call To Arms” on behalf of Captain Snuggles. David and Corrigan were born with the same rare disorder. David’s family chose to transplant his liver, in order to protect his brain, and he had some serious complications. Sadly, Baby David’s little body could take no more and he left this world to rest on the lap of Jesus. His mother, Amy, posted a brief statement on her blog:
I have no words to convey how I feel at this moment. It is with a broken heart and non-stop tears that I must whisper to the wind……
Today I held Capt Snuggles for the last time. I cradled him in my arms as I watched him go. The pain and emptiness I feel is beyond measure. I am broken.
Some of the saddest words ever typed. I could hardly breathe for a moment when I read the news. My heart is broken for Amy and her entire family. If you are so inclined to leave a message on her blog please visit here to do so here.
Godspeed little man.