Reagan has Glutaric Acidemia Type 1 (GA-1), a rare genetic disorder that was found on her newborn screening. GA-1 requires a strict diet and medication to help keep the amino acids Lysine and Tryptophan at lower levels. Reagan needs lower levels b/c her body does not metabolize these acids quickly and they can build up to harmful levels in her brain, causing seizures, brain damage or even death.
When people who metabolize normally get sick, their body breaks down proteins to fight infection…when people who have GA-1 get sick, their body also breaks down these proteins, unfortunately, the amino acids Lysine and Tryptophan don’t leave the body quickly, they stick around and build up. When Reagan gets sick, the protocol is a different formula recipe for sick days, and up to 8-12 additional fluid oz. a day to help flush things through. If Reagan can’t keep fluids down, we are hospital bound for IVs, Sugars, Glucose, etc. Her body needs something else to break down instead of the proteins she already has, like from her muscles.
The reason we are on our second auction for Reagan is b/c she did get sick, she did have seizures, brain damage and what the GA-1 community calls a metabolic crisis. The first illness Reagan had was RSV, it put us in the hospital for eight days. When we were discharged from the hospital, we were back in two days due to a metabolic crisis. Reagan collapsed and was essentially immobilized in a nanosecond. The scary thing is that even when the protocols are followed perfectly, nothing is 100% certain or preventative. Nothing in life is, really. And while Rob and I are so extremely grateful for the donations, for our friends who have set up these auctions and for all the money that’s been raised for Reagan, it reminds us of why we have to do this. I frequently think back to our hospital visits earlier this year. They were life changing moments.
In the hospital, two of my closest girlfriends watched Reagan have a seizure. I recently spoke with my friend Laura and she revealed to me how it was the scariest thing she’d ever watched. She watched both Rob and I in fear, watching Reagan…she watched Reagan and feared for her life. We all did. We did not know that April 8th would be a line of demarcation in our lives, pre-crisis and post crisis.
The crisis took Reagan’s ability to crawl, walk, eat, swallow…it took away her muscle tone. We learned that muscle tone is not a strength or work out thing…it’s a neurological thing. Due to Reagan’s entire basal ganglia being damaged by her metabolic crisis, her motor control and muscle tone were lost. Rob and I had ZERO hope when we left the hospital. The neurologist told us Reagan would never smile, walk, talk, eat and that our job was to just “make her comfortable.” It was the most devastating time of our lives. Rob and I will NEVER forget the things we were told, how we felt…there’s even a particular smell that the hospital has and it reminds me of that time. The memories and feelings are forever seared onto us.
Due to Reagan’s brain damage, she also developed a movement disorder called Chorea, which causes involuntary movements, more commonly found in Huntington’s patients. Reagan is on medication for her movement disorder and she has greatly improved.
Reagan has improved in MANY areas. She’s cruising, crawling, standing and eating and drinking a little by mouth. That’s due to prayer, therapy and mediations. We pray A LOT! And we believe that God is doing his thing and being the Great Physician that he is…he’s not bound by earthly knowledge like that neurologist who said Reagan would never do any of these things. He made Reagan and he knows how she works. And God has given us hope to hold on to b/c we have been told over and over by the medical community that Reagan is making incredible strides and that she really shouldn’t be able to do a lot of what she is. The only explanation is G-O-D (are you with me?).
The auctions sprung from our insurance co. denying therapies after they approved them. Through social media, this blog and our friends hounding our insurance co. on Twitter and FB, our file was escalated and they found clear evidence that we were indeed told Reagan was to receive 272 therapies through the end of the year (not just 30…you need a bit more than 30 to recover from a traumatic brain injury).
We’re quite certain an angel was working the day Reagan’s therapies were approved. But next year, they have let us know we will not have the amount of therapies that were approved this year and that’s why we’re raising money.
So now you’re up to speed on why we are having the auction…it starts TODAY here at 8 p.m. EST.
And unfortunately, Reagan is not feeling well today. She’s got a slight fever and is pretty congested. When she gets sick, it takes me back to the worst times of our life, spending those two weeks in the hospital for her metabolic crisis. The difference with her being sick now vs. then, is now she has a G-tube so we can get all the fluids we need to into her, as long as she keeps them down.
If you could pray for Reagan to feel better, to not have another crisis or seizure we would be extremely grateful. And please check out the auction and bid…it’s for an amazing little girl. Thank you!