On July 1st 2008, we were blessed with beautiful twin boys, Landon and Evan. Everything was typical through my pregnancy, just as the two before. Morning sickness, cravings, not to mention swelling, heartburn, fatigue. I have always loved being pregnant, everything about it, even the labor. Such an amazing thing, knowing you are bringing a life into the world.

I lost a baby in November '06, so what a blessing to hear "it's twins"!! As I lay there waiting to hear the cry of two healthy boys, my Mother and my husband by my side, I am praying. Lord, please help me do this, I need Your strength. Landon was layed on my chest, 6lb. 1oz. screaming loudly! Seven minutes later, Evan Ray, 6lb. 1/2 oz. They didn't leave him on my chest as long, he wasn't screaming the way Landon was either, was something wrong? Was there something they weren't telling us? They wisked them to the nursery, they passes all the usual tests and were brought back to my arms with a clean bill of health. They were soon joined ny their big brother's, Ethan 8, and Logan 5, who couldn't get enough of them.

The weeks to follow were just as I had remembered with my first two, sleepless nights, breastfeeding struggles, and just pure bliss. When Evan was about six weeks old, we starting noticing some small differences between he and Landon. Some things we could write off as just "all kids are different", and some things brought more concern. Evan and Landon both ended up with bilateral inguanal hernia's at just 5 weeks old, and were operated on to have them repaired. About a week later, I noticed Evan's soft spot looked puffy, I took him to the Dr. expecting to hear, he is fine, your worrying too much. Well, he says take him to the lab, he needs to be tested for Meningitis. Of course I was hysterical, only to hear he is fine, sometimes this just happens.

As time went on, as Landon started smiling, rolling over, sitting up, and eventually crawling, Evan was always two steps behind. I began thinking more every day that something wasn't quite right. Here are some things I was noticeing: From the time Evan was born, he had a sunk in chest, we were told this was Pectis. He also sounded very loud when he breathed, we were told this was Tracialmalagia (sp?). Also, one of his little feet was turned in, we were first told this was club foot, then refered to Shriner's Hospital to have it looked at. He also had weak muscle tone, some gagging when eating and drinking, and a very narrow palet. At Shriner's he was mis-diagnosed with a mild Cerebal Palsy. Oh, my heart sank, how, why? Was it something I did when I was pregnant, or something during the delivery?

I immediately called the Pediatrician, trying to talk through my tears. He was convinced that Evan was fine, and he was just slightly behind, he told us not to worry, that he believed these things he was expieriencing were to be outgrown. My heart told me different, we went to several specialists, all said the same thing, he is fine. With much persistance, I got the Pediatrician to give us a referal to Cincinnati Children's Hospital Neurology Dept. We saw the Dr. in April '08. When she looked him over, she said it was not Neurological, but she wanted to run some special tests. They took some urine for something they called a GAG test, said we would have the results in a few days, not to worry even if they came back positive because sometimes they get false positive results. We get the phone call, positive. So what does this mean? We were instructed to make an appointment at the Genetics department. We sat in that room wondering what all of this meant, completely clueless. They were asking us all kinds of questions, family history, is there anyone with genetic problems in your family. The whole time we are thinking, it's just a false positive result, he is ok. The Dr. walks in, looks at Evan, and she immediately knows. She starts telling us about MPS1 and MPS2. She says she is certain that Evan has one of the two. Her explanation, "MPS is an enzyme defficiency, without this enzyme, sugars build up in all the vital organs eventually causing all of them to shut down." Ok, is there a light somewhere in this dark tunnel you are taking us down? Our first question, "Is it fatal?" Yes. But, with MPS1, he has the oppertunity to recieve a Bone Marrow Transplant, this is very risky, but he could go on to live a normal life with a succesful transplant. With MPS2, he would recieve weekly enzyme replacements, for life, as long as he would live. So, of the two, our thought was that MPS1 was the one we were hoping for. They drew more labs, and told us we wouldn't have the results for another two weeks.


I will never forget leaving the office that day, putting my perfect babies in the car, and thinking, I can't do this. Asking God why, why have you let this happen? Not my baby, I can't live without my child Lord. Please let the test come back ok, let them be wrong, please God! We prayed healing for Evan every day for that two weeks, I honestly felt like my whole world was crashing in around me. Two weeks came, I called to see if they had the results, MPS1. Now, where do we go from here.