Bill, Debbi, Amy (17), Marilyn (11), Dan (14)

Hi Everyone!! We found out about this from USA Today, and we both wish we had had this giant support group to help us 13 years ago when our daughter, Marilyn was born!

Marilyn was born with fibular hemimelia syndrome. She was missing her R fibula in her leg and some of the bones in her foot. Her older brother and sister were “normal.” At first we were told she would just need a few minor surgeries and would be fine. When she was a week old, however, we were told she would need to have her foot amputated. We were devastated! How could they do this to our precious infant? We were referred to Shriners in Salt Lake City and we saw Dr. Sherman Coleman. He had cared for about 17 children with this disorder over the years and had tried many types of surgeries. In the end, however, all but one decided to eventually have an amputation. The parents wanted surgeries for the child to have a normal “foot,” but this didn’t happen–he said he was treating the parents and not the child. Because of this he told us if we opted to try surgeries we would need to find another surgeon. He would never put another child through all of that again. Since he was considered “the authority” at the time, we decided he knew best. The amputation didn’t need to be done until she was a year old and I will always be grateful for that because it gave us time to prepare and love Marilyn as just a baby.

One of the things that helped us the most at this time was that we were able to visit a 6 year old boy who had the same problem, but in both legs. Here I had thought Marilyn might never walk and was I surprised to see Taylor running all over the place with his prostheses on. Then because I worried about Marilyn being a girl and wearing dresses, etc. I found a college girl at BYU who had the same problem and wore a prosthesis. She was beautiful in every way and didn’t feel she was handicapped at all. In fact, she was planning on going on a mission for the LDS Church, where she would be required to wear dresses every day for 2 years! That was just what I needed to see and hear.

Marilyn had her Symes amputation at 1 year and has done great ever since. One thing we did that was very helpful was the first week of school each year, Marilyn and I took all her prostheses to class and did a “show and tell.” Because of this, the kids really didn’t make fun of her much–they just thought it was fine to wear a prosthesis. At the beginning of 4th grade, I asked Marilyn if she wanted me to come and do our “show and tell,” and she said she thought she could do it on her own from then on. I shed a few tears that day!

Last year in 6th grade was a little rough. That is the beginning of Middle school, so there were a lot of children who didn’t know Marilyn’s situation. One little girl came up to Marilyn and said, “What is wrong with your leg? Your leg is sure ugly. If I had a leg that ugly I wouldn’t want to be on the face of the earth.” Needless to say, she was hurt. She didn’t want me to become involved, and she handled it herself. She said she just spoke with the girl a few days later and told her about her leg. She hasn’t given Marilyn any problems since then. Marilyn has lots of friends and they are very protective of her and will “deck” anyone that makes fun of her. Marilyn has also been involved in many sports–softball, volleyball, basketball, swimming, tennis, and skiing. She may not have the most talent, but she tries extra hard and can hold her own.

One year “The Nutcracker” was being put on and my older daughter tried out for it. The people in charge called me up and asked if Marilyn was going to try out. I said no, I didn’t think that would work too well and they said they thought she would do great, and they would make a special part if necessary. She ended up doing cartwheels in a regular part and it was a real self-esteem booster for her. It made me feel great that they would do this (also had a Down’s child in it). It really made the production more special.

I teach nursing at a community college, and I share some of my experiences with my students. I hope they will be sensitive to parents who have children born with anomalies.

To close, I wanted to share an interaction I had with Marilyn when she was 10. One night I was putting her to bed and she started saying how her leg hurt etc. She said she hated her leg and wished she didn’t have it. I let her talk for a while and then I told her I was sorry and if I could have the prosthesis instead of her, I would. She looked up at me and said, “Mom, you couldn’t handle this.” When she said it I realized she was probably right and I told her she sure handled it well.

Thanks for sharing and we look forward to being a part of this group.

Marilyn plays basketball