Some say the magnolia flower represents perseverance. For the staff at Heartspring, that same word could be applied to a very different Magnolia—the little girl Physical Therapist Cheryl Jabara describes as having a “wonderful, yet stubborn” personality.
At only a year old, Magnolia is blooming—making inspiring strides in her development, and fighting the odds against her. She has Wolf-Hirschhorn Syndrome (WHS), a diagnosis with an increasing mortality rate for children before the age of two. Wolf-Hirschhorn Syndrome is a condition that affects many parts of the body. Major features of this disorder include a distinctive facial appearance, delayed growth and development, intellectual disability and seizures. Magnolia was diagnosed with WHS in the utero.*
“We decided that we were going to ‘hope for the best, but prepare for the worst,’ that’s been our motto,” said Magnolia’s mother, Hilary.
Magnolia’s family came to Heartspring Pediatric Services with little expectation. Studies on WHS said their daughter would have severe developmental disabilities, such as not being able to show emotion. For that reason, according to Hilary, “smiling was incredible.” Her progress has blown them out of the water.
With the help of Cheryl, Hilary and her family now call their approach “cautiously optimistic,” crediting much of the added optimism to Cheryl’s insistence and drive for Magnolia’s progress.
“Cheryl has proceeded like Magnolia will accomplish things. It’s a matter of when not if. Where Magnolia at 17 months is further than I thought she’d be at five years,” said Hilary.
Since beginning therapy eight months ago, Magnolia demonstrates that true strength can come in a tiny, 11 pound package. She came from barely being able to hold her head up to standing at support.
“What makes Magnolia special is that she has come a long way in what I feel is a short amount of time,” said Cheryl. “She rolls over, is reaching and batting at toys, can sit by herself for short periods of time and is able to stand at support with a little help.”
It is predicted that Magnolia will have significant developmental delays. Some children with similar conditions don’t ever walk due to musculoskeletal deformities and muscle tone weakness.
But for a persistent little girl and her newly optimistic family, walking is a realistic goal.
“At this point, I believe walking is very much in her future. Whether it’s assisted or unassisted, I fully believe it is something she can accomplish,” said Hilary. “I never even dreamed that would even be possible.”
As Magnolia continues with therapy, improving overall strength is a focus. Physical therapy will utilize weight bearing activities in different positions to achieve this. She has also begun treadmill training to work on pre-walking skills.
“A goal of mine, is to make sure she gains the strength necessary to fight an infection,” said Cheryl.
Much of her success has been and will be partially because of her family’s involvement.
“Her family is supportive and good with follow-through on any suggestions I have,” said Cheryl. “Part of Magnolia’s success is attributed to their hard work.”
According to Hilary, the family tries to imitate at home what is done in therapy. They are able to use the same equipment and apply educational techniques helpful in teaching Magnolia some of the skills parents of typically developing children take for granted.
“You don’t ever think about the process of getting to something like sitting up,” said Hilary, “we have to know how to make it happen for Magnolia.”
The educational tools that Cheryl and the Heartspring team have provided for Magnolia’s family have been invaluable. “The educational component is huge,” said Hilary.
Like many mothers within the Heartspring family will say, education and early intervention are imperative to a child’s success.
“But it’s never too late to see some amazing things,” Hilary added. “It’s an amazing place to be part of.”
*Information taken from http://ghr.nlm.nih.gov/condition/wolf-hirschhorn-syndrome.