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It is with great humility that I create this GoFundMe page for my courageous, brave, strong & inspirational daughter, Leah Abate Ochs, to assist with her medical bills & expenses. Leah was born with Fibular Hemimelia, a rare birth defect where part or all the fibular bone is missing and there are associated limb length discrepancy, foot deformities, and knee ligament problems.
Let me tell you a little about my Leah. Leah’s 19 years old and so excited to start college this Fall. She’s a very bright young lady, an excellent student, an all-star softball player, an overachiever in everything she does and has an amazing sense of humor and wit. She’s a hard worker and has been at her job at Sprint in Romeoville for close to 2 years. She loves her family, her dogs Bruno & Nunzio, music & concerts (it’s in the blood), her friends, sports and life itself. She’s been sweet since the day she was born and is one of the two reasons I exist.
Leah’s been treated since birth for her condition by countless surgeons, most recently by specialists at Children’s Memorial in Chicago. I’m sure they’re all great doctors but there came a point where we felt we exhausted all available options for proactive health care in this area. Leah had surgery at age 11 to help correct the leg length discrepancy and we were advised that was the solution to her problems. Over the course of the last year or so, Leah started to experience much more pain than she normally lives with, pain in areas that never hurt before and drastic limitations in activity and endurance levels. This caused me to reach out to Mayo Clinic in Rochester, MN, where I set up testing and consultations last month with a leg length discrepancy team, a pediatric team that is familiar with fibular hemimelia, as well as a foot and ankle deformity team.
Although the news we received was brutal, I’ll forever be grateful for these doctors. Leah’s present medical condition is a misalignment of all bones between her left and right legs, forward rotation of her left pelvis, left femur is longer than her right, her left patella is floating, underdeveloped tibia and fibula, underdeveloped muscle and soft tissue, malformed left ankle joint, fusions of cuboid bones in the left foot, as well as a missing metatarsal and pinky toe on the left foot. Leah’s ankle has collapsed and her Achilles heel, which should be straight, is in the shape of the letter “C”. Because of the fusions of the cuboid bones, her ankle, as well as all soft tissue, have been responsible for all movement of the ankle and foot. There is no cartilage remaining in her left ankle and because of this, a divet has formed.
The surgeons advised us that there is no cure and no answer found in a medical book. There are so many issues to address and they cannot determine, for example, what steps 7-10 medically will be until they get answers to steps 4, 5 & 6. The Mayo Clinic trip is the beginning of a life-long medical journey. My unbearable reality is that in order to get my child the medical attention she needs to walk, it would leave us homeless. It’s a choice of paying the rent or going to Minnesota. It’s getting Leah the custom casted brace she can never go without or pay the utilities for the month. It’s replacing Leah’s mismatched size 9 right shoes & size 7 left shoes for new pairs to accommodate the leg brace, or a week of groceries. I have a full-time job and Leah has medical insurance but even after, I’d still be left drowning. As it stands, we need to return to Mayo ASAP for a panel of live xrays, cortisone injection under ultrasound, and discuss possibility of bone fusions and surgeries to insert rods, which would leave her in a non-weight bearing state for 4-6 months. We are prepared to face whatever is to come and will always be thankful for the Doctors at Mayo Clinic.
We are a very strong family unit and we’re fighters but this has been devastating, the challenge monumental and the anguish unbearable. As a parent I cannot be complacent and I will do anything to get Leah the medical attention she must now have.
We thank you so much for taking the time to read Leah’s page and please say a prayer for anyone who’s ever felt hopeless, for any reason.
Let me tell you a little about my Leah. Leah’s 19 years old and so excited to start college this Fall. She’s a very bright young lady, an excellent student, an all-star softball player, an overachiever in everything she does and has an amazing sense of humor and wit. She’s a hard worker and has been at her job at Sprint in Romeoville for close to 2 years. She loves her family, her dogs Bruno & Nunzio, music & concerts (it’s in the blood), her friends, sports and life itself. She’s been sweet since the day she was born and is one of the two reasons I exist.
Leah’s been treated since birth for her condition by countless surgeons, most recently by specialists at Children’s Memorial in Chicago. I’m sure they’re all great doctors but there came a point where we felt we exhausted all available options for proactive health care in this area. Leah had surgery at age 11 to help correct the leg length discrepancy and we were advised that was the solution to her problems. Over the course of the last year or so, Leah started to experience much more pain than she normally lives with, pain in areas that never hurt before and drastic limitations in activity and endurance levels. This caused me to reach out to Mayo Clinic in Rochester, MN, where I set up testing and consultations last month with a leg length discrepancy team, a pediatric team that is familiar with fibular hemimelia, as well as a foot and ankle deformity team.
Although the news we received was brutal, I’ll forever be grateful for these doctors. Leah’s present medical condition is a misalignment of all bones between her left and right legs, forward rotation of her left pelvis, left femur is longer than her right, her left patella is floating, underdeveloped tibia and fibula, underdeveloped muscle and soft tissue, malformed left ankle joint, fusions of cuboid bones in the left foot, as well as a missing metatarsal and pinky toe on the left foot. Leah’s ankle has collapsed and her Achilles heel, which should be straight, is in the shape of the letter “C”. Because of the fusions of the cuboid bones, her ankle, as well as all soft tissue, have been responsible for all movement of the ankle and foot. There is no cartilage remaining in her left ankle and because of this, a divet has formed.
The surgeons advised us that there is no cure and no answer found in a medical book. There are so many issues to address and they cannot determine, for example, what steps 7-10 medically will be until they get answers to steps 4, 5 & 6. The Mayo Clinic trip is the beginning of a life-long medical journey. My unbearable reality is that in order to get my child the medical attention she needs to walk, it would leave us homeless. It’s a choice of paying the rent or going to Minnesota. It’s getting Leah the custom casted brace she can never go without or pay the utilities for the month. It’s replacing Leah’s mismatched size 9 right shoes & size 7 left shoes for new pairs to accommodate the leg brace, or a week of groceries. I have a full-time job and Leah has medical insurance but even after, I’d still be left drowning. As it stands, we need to return to Mayo ASAP for a panel of live xrays, cortisone injection under ultrasound, and discuss possibility of bone fusions and surgeries to insert rods, which would leave her in a non-weight bearing state for 4-6 months. We are prepared to face whatever is to come and will always be thankful for the Doctors at Mayo Clinic.
We are a very strong family unit and we’re fighters but this has been devastating, the challenge monumental and the anguish unbearable. As a parent I cannot be complacent and I will do anything to get Leah the medical attention she must now have.
We thank you so much for taking the time to read Leah’s page and please say a prayer for anyone who’s ever felt hopeless, for any reason.