Fibular Hemimelia Support & Awareness
My family is raising awareness about this condition and these ongoing stages associated with this serious condition involving their growth rate and their limbs. Many children all over the world have to deal with this condition called Fibular Hemimelia upon birth. Fibular Hemimelia is a birth defect where part or all of the fibular bone is missing. It can be associated limb length discrepancy, foot deformities, and knee deformities that are present at birth.
This is a shared post from my daughter’s Facebook page and this is Quinn, my granddaughter that will be three years old in November of this year.
Her mother’s words:
“This is Quinn. She is my everything and my hero. Although, she is my daughter I find myself looking up to her a lot for how strong she is. She was diagnosed with fibular hemimelia at four months old after I noticed her legs were not developing at the same rate. She also had a foot deformity that doctors just kept saying was nothing more than a congenital foot deformity. I am so glad I pushed for answers so she gets the correct treatment as some, unfortunately, do not. She has had approximately 10 X-rays since birth, two braces, seen about 5 different specialists and just recently got a raised shoe. I know we have a long road ahead to get my baby two semi-normal legs. We will face the possibility of knee and ankle reconstruction and leg lengthening but my biggest worry is making her feel normal. She wears two separate shoe sizes and it is a struggle just to find something as simple as a pair of shoes not to mention adding the lift modification to the shoe. I find it so important to educate society on limb difference and to help others realize they are not alone. I find the more educated people are the less judgment they are. Myself and many other mothers are writing you on behalf of the FH community to get support and get the word out. People go undiagnosed and misdiagnosed on a regular basis and we would love to help decrease this and let people know there are options. We love our FH warriors.”
For more information about this please go here: http://www.paleyinstitute.org/orthopedic-conditions/fibular-hemimelia/fibular-hemimelia
Or here for questions to be answered:
Quinn spent a day at the Zoo with her parents
Then, going home she went to sleep.
On September 13th of 2017, Quinn was diagnosed with Duane Syndrome. I noticed that one of her eyes seemed to turn differently than the other one at times. After seeing it continue, I asked her mother, Miranda to check with her doctor about it. Today, we learned that she has this syndrome. The condition is associated with fibrosis of the muscles that move one’s eyes.
**For more information on this syndrome go to these web links > https://www.genome.gov/11508984/