Maddie Brown gave birth to her first child about a year ago.
About two months later, the daughter of Kody Brown and Janelle Brown revealed that little Evie had been diagnosed with a rare medical condition called fibular aplasia, tibial campomelia and oligosyndactyly (FATCO) syndrome.
“It’s a rare medical syndrome where bones in extremities do not fully develop,” the Sister Wives cast members explained to fans at the time.
Just how unusual is this condition?
It only affects five in every one million babies.
“We knew something was wrong when we went in for a routine anatomy ultrasound at 26 weeks and what should have taken 45 minutes, ended up lasting a nerve-wracking two hours,” Maddie continued last October.
“It was then that the doctor told us that they couldn’t find all ten fingers and diagnosed the baby with oligodactyly (fewer than ten fingers),” Maddie also wrote.
“Although this was better than expected, it was still heartbreaking news.”
Fast forward several months and Maddie has provided social media fans with a new update on her daughter, who is adorably pictured above and below.
“Evie received some major gifts for her 1st birthday.
“Her surgeon laid the groundwork for her new foot and mobility it will bring, by way of a Boyd amputation,” Maddie explained on Instagram as she posed with her baby girl, whose leg and hand were wrapped in bandages.
“Another [operation] gave her some extra mobility in her hand, by clipping her webbing she had in her right hand.
“She is home and is recovering beautifully.”
Because the cause of FATCO is unknown, and because so few kids around the world have this disorder, little is known about it.
No one can say for certain what the future holds for anyone diagnosed with it.
For thsoe keeping track, however, one of the procedures Evie recently underwent, a Boyd amputation, is an amputation at the ankle that helps with stabilization.
Maddie and her husband, Caleb, are also parents to a three-year old son named Axel.
Although the former was anxious to open up about Evie’s condition, she thought it would be best to share their story.
“It’s abnormal, and it catches people off guard, but I want her to grow up and feel proud about who she is. If I’m hiding this to protect her, is it really helpful?” the mom of two previously told People Magazine, adding of her concerns:
“How will she be at 70 years old? Will this come back and haunt her? There’s still a lot of unknowns, which is hard.”
Since sharing her diagnosis, Maddie has talked about how she’s adjusting her expectations for the life she thought Evie would have.
“We all want to give our children the best fighting chance. Most times that best fighting chance is different [than] what we think it should be,” she wrote on Instagram in April.
“Evie’s life will look different than I thought and that’s OK.
“She was #bornjustright to live the life that gives her the best fighting chance.”
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