Mom and dad Alex and Dave Robins are in a ‘race against time’ to save their daughter from a rare degenerative condition that will turn her body to stone.
7-month-old Lexi Robins suffers from Fibrodysplasia Ossificans Progressiva or FOP, which causes skeletal bone to grow in the body’s muscles, tendons, ligaments, and tissue, even after minor injuries.
According to Hertfordshire Live, the desperate parents from Hemel Hempstead are now launching a petition to improve funding for treatment for FOP.
Dave described the fight for the cure as a “race against time” as he called the hopelessness he felt when his daughter was diagnosed with the rare condition.
“It will severely reduce her mobility,” he expressed. “FOP itself is classified as one of the rarest and most degenerative diseases known to medicine.”
Having the condition means Lexi must be very careful as even the most minor fall could result in serious consequences.
Dental work, vaccinations, or injections must be handled with the strictest care.
Despite the cruel condition, mom Alex said that her daughter is “absolutely brilliant.”
“You almost couldn’t write it. She sleeps through the night, she smiles and laughs constantly, hardly ever cries. That’s the way we want to keep her,” she said.
Lexi has grown more lumps ono her head recently, and the parents say they are monitoring her all the time.
“It’s a race against time,” Dave said. “As a parent, when you first get the news it’s so raw and heartbreaking. You don’t see any hope whatsoever.”
“Now, with the support everyone’s given and with the clinical trials that are happening and the amount of specialist people working on what is such a rare disease, I feel hopeful that there is something for Lexi going forward,” he continued.
“I don’t know when it’s going to be, that’s when it’s a true race.
“There will be something, in our lifetime, that is going to be able to support her, whether it be a treatment or a cure.”
Alex, 29, added: “Obviously it’s a journey no one would want to be on. We’ve had incredible support locally, nationally and in ourselves it’s hard to manage.
“We’ve got Ronnie who is Lexi’s older brother. He’s three years old so we have to make sure that no conversations are taking place in front of him because we don’t want him to know what’s going on or pick up any energy.
“In terms of us, every day it’s hard to deal with but it’s – in a way – getting easier in terms of how well we’re doing and how much positivity there is around the amount of clinical trials that are going on and the research they’re doing.
“It gives us a lot of hope.”
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