Four months into her pregnancy, Kate Fischer received crushing news.
“We had an ultrasound and minutes after we got to be excited about having a girl, they told us something was wrong,” the Carlsbad, California, mom tells PEOPLE.
A test of her amniotic fluid determined that Fischer’s baby had hypophosphatasia (HPP), a very rare and often deadly genetic condition that reduces the levels of mineral and calcium in bones, leaving them weak and brittle. There were no treatment options available for the condition that affects an estimated 1 in 100,000 births worldwide.
“Doctors said that if she survived birth, she’d be bedridden and she’d never walk, she’d never ride a bike, she’d never go to school,” Fischer, 52, recalls. “It was a grim, grim diagnosis and it was devastating.”
As Morgan’s doctor, Cheryl Rockman-Greenberg explains, babies who present symptoms of the condition at birth often succumb to the disease before reaching 6 months old. “Overall mortality for other forms of the condition is between 50 and 100 percent,” she says.
Despite the statistics, Fischer spent the rest of her pregnancy dedicated to researching her daughter’s extremely rare diagnosis and hoping for a miracle. Her hope paid off – thanks to a new drug, Fischer’s daughter Morgan, now 10, has lived to defy those medical predictions at every turn.
Morgan was born with short limbs and bilateral cleft feet that gave the appearance of her legs being crossed. Her femurs were curved “like old-style telephone receivers,” her mom says.
Fischer resolved to take her daughter’s disability “just one day at a time.” For the first few years of her life, Morgan was outfitted with a series of casts and went through rigorous physical therapy.
“When you have a child with a disability, you just have to do what you can to give them as much quality of life as you can,” Fischer explains.
The family’s hope was tested as Morgan struggled to walk, fell constantly and lost all her teeth virtually as soon as they grew in.
“Every tooth she lost we cried and the more they came out the less it hurt,” Fischer recalls.
Then, when Morgan was four, she was accepted into a clinical trial for a new drug, Strensiq. This acceptance to the trial in Winnipeg, Canada, marked the family’s first real hope for treatment.
Within weeks of starting the drug, Morgan’s life changed dramatically. Her bones grew stronger, she started growing and her teeth stopped falling out.
“It was amazing,” Fischer recalls. “She started riding a bike, she started riding horses, she swims, she surfs; life has just gotten better and better the longer she’s been on it.”
This December, Strensiq was approved by the FDA, making this treatment available to HPP patients around the United States. Fisher says it’s been incredible to see the treatment that saved her little girl begin to help others who were once without hope.
“It just shows that there is hope out there,” she says. “We kept on hoping and our prayers have been answered.”