Jonathan Armer (Newport News, VA)
We arrive at a hotel in Nags Head, NC (2 hours from home). They have an indoor pool and they are right on the beach. Jonathan will love it! We made one BIG mistake, we arrived EARLY. Check-in is not for 2 more hours. Jonathan loves to eat, we will go to a close by restaurant and get something to eat while we wait. We explain all of this to Jonathan. We get inside the restaurant and the waitress brings us our drinks and BAM, out of nowhere, Jonathan slaps me and starts yelling curse words. His daddy picks him up to get him outside. Jonathan is kicking him, screaming and throwing things at customers. I apologize to everyone and we leave.
Even though we explained it, Jonathan did not understand why we left the hotel.
We arrive at the babysitters, someone Jonathan knows. When I try to take him out of the car, he bites me, slaps me, pulls my hair and breaks my necklace. The babysitter gets him from us and we leave and try to enjoy our night out. We found out later that the babysitter was a drug addict and was leaving the children with her boyfriend.
Jonathan was trying to tell us something was wrong, but could not communicate with us.
Jonathan wants to go to the Zoo, I get him loaded in the car and we arrive at the Zoo……..Jonathan has changed his mind and does not want to go anymore. We leave and head home, Jonathan gets upset because we are leaving and throws my purse out the window and starts hitting me while I am driving.
He could not make a decision.
We could not attend church, social gatherings or family functions. One of us always had to be home with Jonathan. 2-3 times a week he would have these violent meltdowns and as he got older he started self inflicting pain, he would bite himself until he bled. His daddy would have to hold him down for 2-3 hours to keep him from hurting himself or anyone else.
Jonathan was diagnosed at age 5 with Fragile X Syndrome. I was fortunate to find a doctor that knew enough to test him, but unfortunate that he knew nothing past that. His suggestion was to put Jonathan in a disability home. We declined and choose to deal with it and take it day by day!
For 10 years, this was our life.
Then, a drug trial was offered in April of 2012 but a lot of work had to be done before we could start. Jonathan has, along with Fragile X Syndrome and Autism, a blood disorder (Factor Eleven Hemophilia), he is missing part of his pituitary gland, he has central and obstructive sleep apnea, and many gastrointestinal problems causing him to be on high doses of gastrointestinal medication. All of Jonathan’s doctors were concerned, but saw some great potential for STX209 and like me they were excited to see the outcome, but it took numerous phone calls between Jonathan’s specialist and the staff at Kennedy Krieger Institute before we could get started. We also live 4 hours away from the closest clinic doing the drug trial so those arrangements also has to be made as Jonathan would not be able to do a round trip of 8 hours in one day.
In July 2012 we started the double blind study at Kennedy Krieger Institute in Baltimore, MD. All though we have never had confirmation, we believe Jonathan was on the placebo as we saw no changes and honestly started feeling as though we wasted our time.
In October 2012, a miracle happened and changed our life. Jonathan started the open label extension of the STX209 drug trial. Starting out at the minimal dose we stated to see Jonathan talking a lot more and as the dose increased, so did his progress.
In November 2012, I was getting ready for church and Jonathan said “I go with you and I wear tie”. I held back the tears as I was afraid he would change his mind. I got him ready and off we went to church. I was on edge, I was waiting for the meltdown, but it did not happen. He went to children’s church without me and had a great time and every Sunday between November and the middle of May he has gone with me.
We joined a special needs baseball team with a lot of hesitation, but he did great and loved playing and even practiced outside when there was no games. He then wanted a basketball hoop, so his daddy put one up in the back yard. I can not explain the excitement I felt when I watched him and his daddy play their first game of one on one. We went to a friends cook-out and Jonathan stayed willingly and having fun for 2 hours, before he would not go at all. One day, Jonathan was playing outside with his swords, he came running in the house and told me that dinosaurs were in the yard and he had to keep them outside. He was 15 years old and had finally developed an imagination. Each month we drove 8 hours round trip to Maryland. I never thought Jonathan could do an 8 hour trip, but he did with no problems. Our life was not perfect, but it was manageable and Jonathan became active in it. Just as quickly as it was given to us, it was taken away.
In May of 2013 I logged onto my facebook to see a parent post about the drug trial being terminated. I remember thinking “that poor Mom”, thinking the clinic she used was no longer doing the drug trial. I remember thinking we had nothing to worry about because Jonathan would be on the open label for 2 years, and I was confident they would have FDA approval by then. I remember reading further in the post to learn it was all clinics. I quickly called KKI to learn that this, was indeed true. Lost funding, titrating down immediately, we are sorry. That was all I heard, I hung up and I cried.
Immediately starting the tirating, we started losing “our” Jonathan. Just dropping from 45mg to 30mg, he refused to go to church or play baseball. He has not played basketball with his dad in the backyard. He has not gone outside to play at all. From 30mg to 20mg, the violent meltdowns are back and we are constantly wale king on egg shells to try to not upset him. He tried to bust the window out of the car with his fist. He started punching someone else’s car at the park at his daddy had to take him down on the concrete. From 20mg to 10mg, he sits in his room and cries. We do not know why, and I do not think he does either.
I am grateful for the time I got with Jonathan, and I am angry that we have lost that. I have hope that something in the future will help these children like Jonathan, but I am losing hope that Jonathan will benefit from it. I am happy he has kept some of the educational things he has learned, but more than any feeling, I am scared of what Jonathan’s future will hold for him.