My name is Sarah and I live in Elizabeth NJ with my mom, Maria and my brother David. My grandma, my aunt and my cousin live downstairs. I have a dog and a cat. My dog’s name is Kiwi. She’s a toy Yorkie who is almost 4 and my cat is a boy Ragdoll named Max who is almost 14!
As soon as I was born the doctors noticed that my skin was sloughing off and when they suctioned my mouth the lining of my mouth came out. They didn’t know what was wrong, but they called another hospital and I was picked up that same night. A few days later they told my parents I had EB, but they didn’t know which kind. Later after biopsy results came back they knew I had Dystrophic EB. I have Recessive Dystrophic EB, but I was never fully diagnosed because the genetic tests were inconclusive. Only throughout the years because of my symptoms, the doctors were able to diagnose me with the recessive form. We are called butterfly children. I know some kids don’t like the comparison but I don’t mind it. As a matter of fact I like it because butterflies are pretty.
I go to public school and I’m in eighth grade. I have a nurse that meets me at school and takes care of me for the rest of the day. Before I started this school in second grade, they prepared all the teachers and the students and everyone in the building for my arrival. The first day of school everyone knew me and said hi to me in the hallways. I was surprised and felt special. : ) Since my school is so big, it’s hard for me to walk the halls. I use a wheelchair that the nurse pushes. Every other Thursday three of my friends and I meet together in a classroom for lunch. We play games and talk. This was organized by the school therapist so I could spend more time with students since my day is short.
I have a half day every day so I can go home and rest before my bandage changes. I am pretty tired by the time I get home. My mother works so when I get home from school, my grandmother is home waiting for me. She gives me some lunch and then I take a long nap so I’m well rested for when I have to do bandages.
Since I get blisters in my throat and it is very scarred i have to eat soft foods. My mom prepares tons of soups and other soft foods for me to eat and she freezes them so I can have them at any time. About a year and a half ago I had lost a lot of weight. I had lost 25 lbs. I was 90 lbs and went down to 65 lbs. One day my mom sat next to me and said that I had not been eating very well and that it was time to do something about it. Right away I knew she was talking about getting a feeding tube. By that time I had already accepted it and realized I had to do it. Now I am 104 lbs and which means I gained almost 40 lbs! Every night I get my feedings along with some medicines. That’s another good thing about the feeding tube. I don’t have to taste all my medicines like the iron and all the other disgusting medicines. Throughout the day between medicines and supplements I have about 16 doses. Sometimes even through the tube I feel queasy and have to have mints that I keep in my room for whenever I feel this way.
I’ve had many dilatations to open up my esophagus because of scarring. Because of my anemia, I now get iron infusions every month. The iron infusions are supposed to help raise my hemoglobin levels and also help me with wound healing.
I’ve had some pretty exciting things happen in my life. I’ve been to Paris. I went to visit my aunt/Godmother, and grandmother and my baby cousin from my father’s side. It was really beautiful and I enjoyed all the scenery. I even visited the palace of Versailles. My mom arranged for me to go to Beauty and the Beast on Broadway and after the show I met one of my favorite Disney channel actresses. I’ve been to Disney World several times. But the best thing that ever happened to me was getting Kiwi!
This is an exciting year for me because I have wished to go on a Disney cruise to Alaska. The Make a wish foundation is in the process of granting my wish. Also, this year I will be graduating from 8th grade and going to high school. For high school we decided that I would be home-bound so a teacher will come to the house. Many times I am too sore and have to stay home from school. This way even if I’m not feeling well, I will be able to learn. I am now 14 years old and for my 15th birthday I am going to have a Quinceanera, a traditional coming of age celebration for Latin girls. My mom was born in Cuba and she had one too.
The worst thing about EB is going through all the pain and all the time it takes away from me. When I have my bath every other day and my bandages changed, it takes about 5 hours, sometimes more. When I do not have my bath, it’s about 2 ½ hours. The process is always painful and long, but I keep myself distracted by watching TV and playing with my iPad. I know that I have to get my bandages changed in order to feel better. After I have my bath and bandages changed I feel more comfortable and a lot less sore. I’ve been doing bandages for so long that I don’t know what I would do if I had the extra time.
Sometimes EB makes me sad. Being with my mom and just talking to her makes me feel a little better. Being with my baby Kiwi makes me feel better also. Sometimes I wonder what it would be like to not have EB, but I also think that God gave me EB because he knew I was strong enough to deal with it. Someone had to have it, so why not me? Being eligible to make a wish is one good thing that has come out of EB and especially getting all the extra love from a lot of people.
In my spare time I like to play with my iPad. My new interest is making Polymer clay creations. I also like to paint ceramics. If I didn’t have EB I would probably be outside more and play some sports or just run around. When it’s hot I’d probably be able to go out a lot more than now. I would go to the beach or just enjoy the warm weather.
If I could say anything to EB, it would be ‘Go take a hike!“ and then I’d kick it in the gut. I’d probably say another thing or two to it!