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Zoë was born with a rare birth defect called fibular hemimelia. Fibular hemimelia results in all or part of the fibular bone missing, a difference in the length of the limb, and foot and knee deformities. In Zoë's case, she was born without her fibula causing her tibia to bend, missing ankle bones, only three toes on her right foot, and her foot in a fixed pointed position. My husband and I were unaware of her birth defect until the day she was born because of the way she was positioned in utero (her right leg was towards me). We were both shocked upon her delivery.
The first two years of her life were very difficult for us. We sought different doctors looking for answers for next steps. Some doctors told us amputation was an option and others suggested seeing orthopedic specialists. Finding the best orthopedic specialist for Zoë was our main priority. We were placed in contact with the Paley Institute in West Palm Beach, Florida. Dr. Paley specializes in reconstructive orthopedic surgery including limb lengthening, treatment and patient care and has over 25 years of experience. We were certain he and his team were our best possible option for Zoë. In the mean time, Zoë lived the life of a carefree kid. She learned to crawl and later taught herself to walk. She loves to dance, run, jump and has a personality out of this world. Her leg has not held her back what so ever!
After meeting with the doctors, Dr. Paley preformed the SUPER ankle and limb lengthening procedures. Her ankle is no longer in a fixed pointed position, is straightened, and her leg lengthened. The procedure occurred in two stages with the SUPER ankle and leg straightening occurring first in 2019 followed by the lengthening stage in 2020. The lengthening process lengthened her leg about 5 cm and required over 10 weeks of physical therapy (after surgery) in which Zoë learned how to adjust with two normal size legs. Within those 10 weeks of therapy, we relocated to West Palm Beach, Florida. We currently reside on the Mississippi Gulf Coast.
Since then Zoë has had physical therapy at home and uses a brace to walk since there is still a difference in her leg lengths. And she’s gotten taller!
This year we are traveling back to Florida for Zoë’s second leg lengthening surgery. We are praying for 6 cm lengthening. We do not have the same living arrangements that we were fortunate to have last time so we are looking for an affordable and reasonable place to stay.
We can only estimate how much money we will need throughout this journey. Zoë's lengthening surgery this May is now the second of four lengthening surgeries she will need in her life time making the total number of anticipated surgeries five by the age of 12. We have raised her goal to help with finding a place to stay and other traveling and medical expenses. We are grateful to any and every person who donates to Zoë's journey, including those who offer prayers for healing for her and prayers for her father and I. If you know Zoë, you know the light she carries. This is an unimaginable journey, but we will do anything for our Little Miss Zoë Kaye.
Attached are links for more information on Fibular Hemimelia and the Paley Institute
Fibular Hemimelia
Limb Lengthening for Fibular Hemimelia
Paley Institute
The first two years of her life were very difficult for us. We sought different doctors looking for answers for next steps. Some doctors told us amputation was an option and others suggested seeing orthopedic specialists. Finding the best orthopedic specialist for Zoë was our main priority. We were placed in contact with the Paley Institute in West Palm Beach, Florida. Dr. Paley specializes in reconstructive orthopedic surgery including limb lengthening, treatment and patient care and has over 25 years of experience. We were certain he and his team were our best possible option for Zoë. In the mean time, Zoë lived the life of a carefree kid. She learned to crawl and later taught herself to walk. She loves to dance, run, jump and has a personality out of this world. Her leg has not held her back what so ever!
After meeting with the doctors, Dr. Paley preformed the SUPER ankle and limb lengthening procedures. Her ankle is no longer in a fixed pointed position, is straightened, and her leg lengthened. The procedure occurred in two stages with the SUPER ankle and leg straightening occurring first in 2019 followed by the lengthening stage in 2020. The lengthening process lengthened her leg about 5 cm and required over 10 weeks of physical therapy (after surgery) in which Zoë learned how to adjust with two normal size legs. Within those 10 weeks of therapy, we relocated to West Palm Beach, Florida. We currently reside on the Mississippi Gulf Coast.
Since then Zoë has had physical therapy at home and uses a brace to walk since there is still a difference in her leg lengths. And she’s gotten taller!
This year we are traveling back to Florida for Zoë’s second leg lengthening surgery. We are praying for 6 cm lengthening. We do not have the same living arrangements that we were fortunate to have last time so we are looking for an affordable and reasonable place to stay.
We can only estimate how much money we will need throughout this journey. Zoë's lengthening surgery this May is now the second of four lengthening surgeries she will need in her life time making the total number of anticipated surgeries five by the age of 12. We have raised her goal to help with finding a place to stay and other traveling and medical expenses. We are grateful to any and every person who donates to Zoë's journey, including those who offer prayers for healing for her and prayers for her father and I. If you know Zoë, you know the light she carries. This is an unimaginable journey, but we will do anything for our Little Miss Zoë Kaye.
Attached are links for more information on Fibular Hemimelia and the Paley Institute
Fibular Hemimelia
Limb Lengthening for Fibular Hemimelia
Paley Institute