Baby Nolan

Meet Joe and Andrea.

Joe and Andrea

You think you know the world’s nicest couple? Wrong. This is them.

Joe is a football coach in a small town here in Texas which is how we first connected. He has coached with both my father-in-law and brother-in-law and has since become a part of the Harrell family. He has the rare combination of being both choke-on-your-food funny and an authentically nice guy. Like the type of guy that will make you laugh til your eyes water and then apologize profusely for making you cry. We just didn’t think Joe could get any better… until he married Andrea.

Let’s just say Joe did well for himself. Andrea is my person at large social gatherings. Everyone has their person… you know, the one you scan the crowd for upon arrival because you know they know exactly how you feel: anxious, squirmy, awkward. And a little more awkward. She’s the person I can hide in the shadows with and talk about how my feet hurt and how I’ve already eaten 4 pieces of cake and how I know it’s only been 6 minutes but I’m kinda ready to go. And I know she won’t judge me and she’ll even go get another piece of cake with me. Barefoot. She is the kind of nice that everyone needs a slice of. If you don’t have that person, I highly recommend her.

Seeing as they are the world’s nicest couple, it should come as no surprise that they drove an hour and a half to the hospital the day I delivered Hattie, gift in hand, even though Andrea was due with their first baby in a matter of days. Hattie and Nolan ended up being 5 days apart.

It is this fact, besides the fact that I love these people, that makes this matter so close to my heart. It so easily could have been Hattie.

Meet Nolan.

Nolan has what is called Congenital disorder of glycosylation type 1a or CDG type 1a.

About 20% of affected infants do not survive the first year of life due to organ failure.

This is a genetic disorder and there is no cure. It is an extremely rare disease; only 100 people in America are diagnosed and approximately 500 worldwide. Along with other delays and complications, the cerebellum, the part of the brain that coordinates movement, never fully develops. Because of this, there is a chance that Nolan won’t be able to walk until he is 2 or 3, if ever. Most patients affected by this disorder are in a wheelchair for the majority of their lives. Often, it causes poor eyesight and Nolan could even become blind in one eye. Nolan does have a  chance of developing and achieving some semblance of normalcy, but the majority of those diagnosed do not.

Also, as this is a genetic disorder, Joe and Andrea are both carriers of the gene. This means, if they decide to have another baby, that child has a 25% chance of being born with CDG.

Firstly, I’m going to ask you to pray. In The Celebration of Discipline, Richard Foster talks about how “Bible pray-ers prayed as if their prayers could and would make an objective difference. … Moses was bold to pray because he believed he could change things, even God’s mind. In fact, the Bible stresses so forcefully the openness of our universe that, in an anthropomorphism hard for modern ears, it speaks of God constantly changing His mind in accord with His unchanging love (i.e., Ex. 32:14; Jon. 3:10).” I know… it’s hard to get past anthropomorphism; my eyes had to go from book to computer, book to computer about 12 times to make sure I spelled it right. But aside from that made up word, this is seriously serious stuff. Our prayers can change things. God hears our cries. Read the parable in Luke (18:1-9) where Jesus basically explains how even mean people give in to repetitive requests, even if it’s just to make it stop because it’s getting annoying. If those guys give in, surely God, who loves us immensely, will do the same if we earnestly ask again and again and again.

A lady in my bible study group was talking this week about the insanity of saying, “I can’t do anything else… all I can do is pray.” ALL you can do is pray? We say it as if it’s a last resort. Like if we have no power to change things ourselves, then we will half-heartedly toss a few words skyward. Prayer is real. It’s a big deal. It’s a game changer. That should be the first thing we do. Not the last.

So the bottom line… Just pray, okay?

Secondly, Joe is a coach and a teacher. This means, they could use our financial help. Not only do they have a long road of doctors’ appointments ahead of them in the metroplex (an hour away), but they also hope to see two of the country’s top specialists: one in New Orleans and one in California. Wouldn’t it be awesome if all three of them could fly there and stay in a hotel and buy meals and not stress about it? We could just say, “Guys. It’s on us.”

My prayer is that we can give Nolan his best chance at life, and help ease the financial burden this puts on Joe and Andrea. If you aren’t in the position to give much, no worries. Give five bucks. That can buy Andrea a thirty minute babysitter when she just needs a break. Or a meal at Chick-Fil-A when she really doesn’t feel like cooking. Or one of those super soft t-shirts at Target because she probably won’t have much cash lying around to do anything for herself.  We are blessed beyond measure, so let’s pay it forward. No couple deserves it more. Promise.

Make a Donation Button

Click that little gold button above for an opportunity to share, but please don’t feel guilted into it. Job #1 is to pray. That’s way more important anyways.