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I am a 5 year old boy and I attend pre-school. I am very active from the time I wake around 7:00 a.m. until the time I go to bed around 8:30 p.m. My full name is Shane David Terry and I would like to tell you about me.

I was born on March 27, 2004 at Crouse Irving Hospital in Syracuse, N.Y. I wanted to see the world so I decided to come early at 32 weeks. I weighed an amazing 4 pounds 10 ounces and was 21” long. I was in Syracuse NICU for one week then they took me for a ride in an ambulance to the House of the Good Samaritan in Watertown. There, I spent two weeks in the NICU. I was eating and putting on weight so the doctor decided to let me go home with my mom and dad. I continue to thrive and today I weigh 40 pounds and I am 42” tall.

I have had three surgeries since birth. I was born with a hypospadias that was severe. I had my first surgery at nine months old. The surgery was 71/2 hours long! I have had two more surgeries since then that were 4 hours each. My hypospadias is almost perfect. I have one more surgery and that will happen when I turn six.

I have received Occupational Therapy, Physical Therapy, and Speech Therapy since I can remember. I graduated from the PT, so I only receive OT and Speech. We do a lot of interesting things when I go with my therapists. We play games, color, cook, play with play-dough, eat, paint and many more fun activities. This is not work, this is FUN!

Activities I enjoy are hunting, fishing, playing on the WII and computer, playing with action heroes such as Spider-Man, Batman, and Superman, reading, coloring, drawing, working on homework, building sand castles, swimming, playing with transformers, singing, dancing, going on the boat, and riding my four wheeler. As you can see, I have many activities that I enjoy. I can go anywhere and find something to do. Peter, my step-dad, took me fishing this summer and I caught a large mouth bass all by myself. It was exciting! During hunting season, I get all dressed up in my camo and go hunting with my dad. We see a lot of BIG bucks! I can’t wait until the day when I can shoot one, have it mounted, and hang it on my wall. My mom and I hang out a lot together and do a variety of things. The one activity that I love the best is spending lots of time at the beach with her during the summer. She says that playing in the sand is the safest place for me because if I fall, it is soft and will not cause a flare-up.

I would like to share with you my story of being diagnosed with Fibrodysplasia Ossificans Progressiva or (FOP) for short. I was born with funny looking feet. My mom says that they are cool looking but I say funny looking. It looked like I had bunions on them. I was also born with bone spurs on my knees and hips, no joints in my thumbs, a hypospadias, crooked pinky fingers, a couple of deformed vertebrae in my neck, heart murmur and I was very stiff and rigid when someone picked me up. Right from the beginning we knew that something was different with me but we didn’t know what. So from the start I had all kinds of doctors that kept an eye on me from P.T., urologists, genetic, hematologists, pediatricians and some others that I can not remember. We traveled all over from doctor to doctor trying to get some answers. The only diagnosis that we received was Distal Arthrogryposis and Multiple Exotosis, but even with those diagnoses some of the doctors didn’t agree. It wasn’t until March of 2008 that everything took a turn for the worse.

It was a cold, Sunday afternoon in March and Peter decided to take me sledding with some of our friends. We were having a great time in the snow sledding when one of the other boys hit me while he was going down the hill. I know that it was an accident but boy did it hurt. I only cried for a couple of minutes and then I continued sledding and cooking hot dogs over the fire. I was having a good time hanging out with my friends. I even went to school on Monday and I felt fine. It wasn’t until Tuesday morning when I woke up that my mom noticed that my right back shoulder was huge. She felt it and it was hard, but it wasn’t black and blue. This is when everything went downhill. We went to see Dr.Gianfagna that afternoon and that night we ended up in the emergency room (E.R.) in Syracuse. We were in the E.R. for 15 hours and probably saw 30 doctors that night and the next morning. Every doctor just kept saying that they had never seen anything like it before. They did several tests on me and still no answers when we left that night.

The next two months consisted of numerous trips to Dr. Gianfagnas’ office and Syracuse to see different doctors. In the mean time, I slipped and fell on my kitchen floor and ended up with another flare-up on my left shoulder. We were not getting any answers from the doctors so my mom asked that we be referred to Boston Children’s Hospital. My mom, Andrea, and I took a road trip to Boston, M.A. on May 11. We spent two days at the hospital meeting with three different doctors. The final appointment that we had was with the genetic doctor, Dr. Sharon Smith. We spent three hours with Dr. Smith answering questions while she was checking me out. I think that I embarrassed Andrea during the appointment because I was naked standing on the examination table and I started dancing in front of her the doctor and my mom. My mom is used to it but Andrea just shook her head and put it down. The doctor was laughing at me!! After the doctor was finished examining me and asking us questions, she left the room for a little while. She then came back with some papers in her hand and said, “I am 95% sure that Shane has FOP.” She then explained what FOP was and said that she was going to call a specialist and get back to us within the next couple of days. We then left the office and headed home. My mom was very quiet on the way home. She said it was because she was just tired and thinking about the last two days. I know it was because she was praying that the doctor was wrong with her diagnosis and that I did not have FOP.

The next morning our phone rang at 8:30 a.m. It was Dr. Smith, she had spoken with Dr. Kaplan, the FOP specialist, and they were in agreement that I had FOP. She said that Dr. Kaplan was headed to China for a couple of weeks and when he returned he wanted to see us. My mom held it together while on the phone but when she hung up she cried and cried. It was an awful day.

The beginning of June came and my mom, Peter, my dad, Tracy and myself headed to P.A. to see Dr. Kaplan. We spent four hours with Dr. Kaplan. He is a very nice man. He explained many different aspects of FOP to us and answered all the questions that we had. He also took my mom and Peter to see the FOP lab and meet some of the researchers working on trying to find a cure for FOP. My mom and Pete said that it was very interesting and they are glad that they were able to experience this.

“Please stop running, Shane,” "Be careful, Shane,” "Use your walking feet, Shane,” “Let me take your socks off, Shane.” These are all the phrases that I hear on a daily basis from the people whom love me the most since my diagnosis of FOP. These are the things that I know about FOP: I cannot raise my hands above my head and as a result I cannot wash or comb my hair or itch my head. I have FOP, my bones lock, I have extra bone in my back and neck, my shoulders are locked up, and I have a hard time bending down so I can't put my socks and shoes on. I am not really sure why these things have happened, but if you were to ask me about my FOP this is what I would tell you. I also know that I hear my mom talking on the phone about different fund raisers that she is doing or would like to do. She is doing this to raise money for research because the sooner they find a cure for FOP then the better it will be for me.

Shane Terry Searching for a Cure for Fibrodysplasia Ossificans Progressiva (FOP)