Angela Okroi thought her second pregnancy was going well. But around 30 weeks, she was diagnosed with intrauterine growth retardation which was stunting her baby girl’s development. Despite this, Angela, Jason and big sister Amelia, welcomed Darcie Grace born at 37 weeks on August 15, 2015, weighing four pounds. “We thought that our birth was the only challenge we would face, but after a few months a home, we started to notice that Darcie wasn’t growing like her sister did, “says Angela. “And in addition to being smaller, her arms seemed to be floppy, and her legs wouldn’t hold weight, even at 12-months.”
Darcie began therapy and Angela and Jason sought a reason why Darcie could not catch up. In December 2016, Darcie was diagnosed with merosin deficient muscular dystrophy. “Our hearts broke when we learned that Darcie has a very rare form of congenital muscular dystrophy,” says Angela.
From birth, children with this type of muscular dystrophy have low muscle tone, feeding issues and delayed motor development. Angela says, “More importantly, we learned that Darcie might never be able to walk or run. Even with extensive therapies and treatments, she may not be able to jump or dance with her sister, or sign up for t-ball. Like other parents, we had all these hopes and dreams for her, but now we are facing a modified life.”
“While we know Darcie as this smiling child who loves making animal noises, watching Disney princess movies, and playing with her cousins, we also do not know what is in store for her because there is a lack of medical research on merosin muscular dystrophy and most congenital muscular dystrophies. Each day is something new; a new challenge for us to face together as a family and within the medical community,” says Jason.
The Orkoi family is thankful for the support they have received from the team of doctors, therapists and nurses in the Mazza Foundation Neuromuscular Program at Lurie Children’s. Darcie is seen by a multidisciplinary team that is part of the hospital’s Muscular Dystrophy Association (MDA) Clinic. The hospital’s clinical partnership with the MDA is helping to improve the care of children like Darcie living with neuromuscular diseases.
The multidisciplinary team focuses on family-centered care and offers families the opportunity to see multiple program experts during a single visit to the clinic. Having multiple experts observe a child’s movement and function during a single visit increases our ability to efficiently recommend and implement therapies, adaptive equipment and treatments to improve their function and well-being.
Angela says, “Darcie’s team has helped us receive the support that Darcie so desperately needs in order to thrive (feeding therapy, AFO’s, hydrotherapy, stander equipment, vital cough assist machine, suction machine, etc.). The doctors and nurses have become a second family to us, and I couldn’t have imagined better doctors and staff to help us navigate this new journey.”
Neuromuscular disorders affect the muscles or nerves that control voluntary muscles, such as those in the arms and legs. These disorders can have an effect on the child’s walking, crawling, breathing, swallowing, and head and neck control. They are often chronic conditions that start in childhood and persist into the patient’s adult life. The Mazza Foundation Neuromuscular Program at Lurie Children’s provides specialized care to families and children with the medically-challenging neuromuscular conditions and advances research to find new therapies.