Name

Name : Andrea J. (Mother, Kandi Franco)

Child: 13 years old

Location: Santa Clara, CA

Area(s) affected: Both feet, both knees, Left hand and forearm

Personal History:

Andrea had surgery on December 29, 2006 to correct some deformities in her left foot and had many complications due to that surgery. She got an infection in the bone and soft tissues and had to have subsequent surgeries and an amputation of the middle toe. A good portion of the tissues around the site of the infection had to be removed so she was left with a huge hole in her foot. We could actually see through to the other side of her foot and there was a lot of exposed bone. She was in the hospital for over 2 weeks. When she finally came home she had a PICC line and needed antibiotics to be administered every 8 hours.

Andrea required daily trips to the doctor to pack the open wound under "conscious sedation." We learned that most medical personnel do not handle pediatric pain very well. They actually packed the wounds while she was awake a few times and the pain was excruciating. I have never heard crying like that in my entire life. I had to really insist on sedation for all painful procedures and examinations. Initially the doctors said it was not possible to sedate her but I later learned it was. I'm so sorry I didn't insist on it right from the beginning.

Fortunately, Andrea recovered and is actually playing on the girl's school basketball team. It was a big challenge finding shoes that could fit her left foot so in the end we had a custom AFO (brace) with a build-up (lift) made for her left foot which she wears without a shoe. It's kind of like a cast or boot with a lift but it's lightweight and more streamlined to her leg.

The AFO has really changed the way we look at her future. She has a very big leg length discrepancy (approx. 7cm.) and we thought the only way to deal with it as she grows was to eventually amputate her left foot and make up the difference with a prosthesis. It seems like now that she has a brace with a good design and the proper build-up she won't need to go through all that after all.

I hope after reading our story people will know that there are options for controlling pain of pediatric patients. I also want to share our frustration in finding shoes that fit anyone with deformities in the foot. No one had ever suggested to us that maybe there just wasn't a shoe out there for her. The custom AFO she's now wearing has really helped her to become more active which has really boosted her confidence. I'm happy to share pictures if anyone needs to get an idea of what kind of AFO has worked for her.

Kandi Franco (Andrea's mom)