In February, our 4-year-old granddaughter, Allie, was diagnosed with Legg-Calve-Perthes Disease, after what seemed, at first, to be an insignificant limp. Before that, Allie was an active child who loved running, biking, swimming, skipping, and rolling down hills with her brother and cousins.
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If you’ve never heard of Legg-Calve-Perthes (LCP / Perthes), it is not surprising. According to statistics, less than 1% of the pediatric population is affected by Perthes, and of those children, only 1 in 5 are girls.
Perthes affects the blood supply to the head (ball) of the femur. With no circulation, the bone begins to die and crumble, causing significant pain, and for some, surgeries, physical therapy, and special casting make up the road to full recovery.
In the final phase of Perthes, the circulation returns, and new bone begins to form. For the lucky kids, the bone will re-form, and the child will be able to be active, without pain, once again. For those kids with more significant disease, several hip replacements may be in their future.
Being a rare disease is not a good thing for many reasons. First, once her pediatrician suspected Perthes, it was a challenge to find a specialist in IN who had experience treating the disease. A quick diagnosis and treatment are imperative for a better outcome.
Once a specialist was located and consulted at Riley Children’s Hospital, it was determined that Allie needed to have PT locally asap. Allie’s parents, Chris and Lauren, were on their own to find someone and the search did not reveal any PT’s who had experience with Perthes, let alone had ever heard of it.
Many of you know our daughter Lauren, from working for us at OnSite Health. She now works at a local surgical center where one of the Ortho doctors was able to help recommend a certified Pediatric Physical Therapist.
Allie’s Perthes journey is just now beginning. She has good and bad days. Her bad days are really bad, and her good days are a new version of “good.”
Easter Sunday was an eye-opener. Our family tradition is to have an Easter egg hunt. The men hide the eggs in the yard, and everyone joins in to help the kids collect the eggs. In years past, we’d start the festivities by shouting, “go!” The kids would take off running to search for their eggs. This year was different. Allie climbed on her uncle’s back and pointed to the eggs she saw, while her dad collected them for her basket. The kids excitedly joined in to help one another as each of them collected their 30-egg limit. These cousins are inseparable… they look out for each other. They have all recognized Allie can’t do things the way she used to, so they are happy to let Allie “dress them up”, while Allie cheers them on from the sidelines when they need to burn off energy in the yard.
Allie’s follow-up at Riley was the day after Easter. We were all anxious about what the doctor would have to say. The news was not what we had hoped. Allie’s parents were told that she needed a leg-lengthening surgery to help preserve her muscle, which is important to keep the crumbling head of her femur in the socket. Surgery was scheduled for May 19th, with a “last look” 1 week prior to surgery.
Surgery meant she would have to wear casts for 6 weeks with a bar between her legs, to keep her hips in place. She would be wheelchair-bound and would require more intense PT following the cast removal, along with wearing special braces.
Anxiety escalated with hopes that improved muscle strength, through intense PT, would be significant enough to postpone or cancel all together, Allie’s scheduled surgery.
The “last pre-surgical look” revealed that Allie’s hard work is paying off. The surgeon said there was enough improvement to postpone the surgery, for now, explaining that 75-85% of Perthe’s kids will require surgical intervention at some point. Allie’s surgeon has ordered a night-time pelvic brace, which will force her head of femur into the socket while she sleeps, in hopes it will be enough to keep the crumbling ball from dislodging. This brace mimics the post-surgical casts Allie would have had if she had surgery. We’ll take it…
For Allie this means a summer with swimming allowed, but still no jumping, running, climbing, or skipping. Keeping fingers crossed and saying lots of prayers that somehow Allie will fall in the 25% of kids that won’t require surgery.
As we write this letter, our minds race with thoughts of Allie and all that she’s been through already, since February, and all that she has ahead of her. Allie is strong! She is a fighter! Her smile can melt your heart, and her laughter is contagious. It’s what makes her tears that much more painful.
Allie will undergo many physical therapy treatments (out of network), trips to Riley Children’s Hospital, x-rays, possible surgery, wheelchairs, walkers, and who knows what else, before she reaches her final chapter of Perthes Disease.
How You Can Help
On July 31, 2022, we are going to “Rally for Allie” at Potato Creek State Park. It seemed fitting as the park is filled with so many of the things Allie has loved to do – swimming, boating, walking, and biking.
We are asking for donations to help pay for the cost of medical bills, PT, and durable medical equipment that is not covered by insurance. A donation will also be made to Riley Children’s Hospital in Allie’s honor.
With a minimum $250 sponsorship, corporate sponsors will receive recognition in our thank you letter at the end of the event. Donate to Go Fund Me by July 15th.
We thank you for your consideration as we know these have been difficult times for so many, and your charitable contributions could be sent to any one of a number of organizations and individuals.
Please save the date, July 31st, and join us to raise Awareness for Perthes, and recognize this beautiful light we call “Allie.”
Warmest regards and deep appreciation,
Connie and Ron Bryan
OnSite Health LLC
