*The following story was shared with us by Brooke's mom, Jess
Brooke was born in Brisbane, Australia in April 2013
with a rare condition called Fibular Hemimelia. Brooke has a severe foot and
ankle deformity, missing bones & only four toes in her smaller foot, and a
Attaining the correct diagnosis has been a long journey with Brooke undergoing several surgeries, numerous full leg plaster casts, strict bracing/splints - all of which had been ineffective. It was during her third relapse that the diagnosis of Fibular Hemimelia Type 4 became apparent.
It was our own research led to us to discuss Fibular Hemimelia with the Doctors and a diagnosis of Fibular Hemimelia (Type 4) was given.
Brooke’s condition (FH only occurs in approximately 1 in 40 000 births) required a complex super ankle surgery in November 2015. Her case was one of the first to be attempted by Australian surgeons; previously Australian children’s surgeries had taken place in the US.
We had began to set up fundraising for the surgery to happen in the United States when we got another private opinion from an Australian specialist and he agreed to do the surgery here in Australia.
Brooke is 4 ½ years old now, 2 years post surgery and still needs to wear the Mitchell Boots and Bar for four hours or more a day to help prevent her foot turning back in.
Brooke will have leg lengthening surgery in the next few years.
She has appointments with her Orthopaedic surgeon every six months and her physio every three months, along with the Paediatric Orthotists for fitting of the AFO (Ankle Foot Orthosis).
It is difficult to fit shoes for Brooke. Wearing the AFO she needs extra width and support so only wears jogger style shoes. If she is wearing other shoes (without the AFO) she needs two different sizes, four sizes apart so we have to buy two pairs. Here in Australia there are several shoe companies that offer us buy one pair, get the second half price.
Having a newborn baby with casting on her legs when Brooke was just 6 days old, along with learning to be a young first time mother with the weight of a medical condition and weekly hospital visits, the frustration of even doctors being baffled at her condition and treatment outcomes.
Being told of relapse multiple times, anxiety over each check up, going through the casting process again and then again.
It was terrifying to know her treatment was not working and the doctors kept suggesting the same be repeated. We kept looking for answers and researching everything we could find all over the world.
Many nights she cried when we put the boots on and there were blisters and hospital visits where we had to hold her down while the doctors examined her or took Xrays.
After the major surgery at Age 2½ - keeping Brooke entertained and happy whilst being in a non-weight bearing cast for 6 weeks then the process of learning to walk again. Brooke was terrified of her own foot & she was too scared to walk on her leg. We had to insist on baths even though she was frightened because she hadn’t had one for 6 weeks - I had been so excited for that moment but had to stay strong when she refused to get in.
Brookes foot has not relapsed since the surgery in November 2015 and she will be five years old next April 2018 – she starts school in 2018 (Prep).
It is expected that around the age of 6 to 7 years she will have leg lengthening on her right limb.
Brooke is a very determined young lady and has achieved many things despite the issues with her leg. She goes to ballet classes and is learning to swim. She came third in her running race at Kindy. She loves life and will be an achiever. I really believe her adversity makes her stronger. "She is a tough little cookie!" says Grandma.
Find out as much information as possible about your child’s condition, join facebook pages for support and make contact with other parents experiencing similar conditions
Never give up on finding solutions for your child :)
*You may reach Jess at www.facebook.com/walkinginbrookesworld