Emily's Story -- A Shriner's Hospital Success Story!

Emily's Story...
by Mommy (aka Sarah Locker)

She's the same size as her peers, and they all dress in the same kind of clothes. The smiles are all equally bright. They all love to play the same games, and listen to the same kind of music. So what makes our little girl different? She's disabled. "Differently-abled", if you want to be politically correct.

Emily was born in 1994, and the first words that we heard were "Congratulations!!! It's a GIRL!!!" For a moment, one precious moment, everything in our world was perfect; we had the little girl that we had hoped and prayed for... for seven years. Then the doctor spoke again. "We have a problem." With those words, our perfect world was shattered; our baby girl needed some very specialized medical care if she was ever to be "normal". Emily was whisked away to the nursery, and it would be hours before we were allowed to see her again. Finally, a nameless doctor with a clipboard visited my hospital room, and told us that she would never be able to walk, and that we could "sign it over to DHS right here, right now if you don't want to deal with this" He said that she would need extensive medical care for her whole life, and that if we didn't want to "mess with it" we could sign the papers right now. My husband and I both told him firmly that we only wanted our baby, and that we would take care of her, and love her, no matter what. "It'll never be NORMAL" he said, and only then would he release her from the nursery.

It wouldn't be long before we came to despise the very word "normal"... it would haunt me, reminding me of what Emily might never be. While other mothers would recoil at the idea of their child being labeled "normal", ironically it became a goal for me. Emily was born with multiple birth defects: bilateral TEV deformity, bilateral tibial torsion, and bilateral femoral antiversion. She also has a significant leg length discrepancy. She has a heart defect, asthma, and a depressed immune system. In spite of all this (or maybe because of it?) she is the sweetest, smartest, most loving little girl I have ever known. I am so fortunate to be her mother! From the day she was born, our life instantly became filled with endless rounds of doctors visits, x-rays, casts being put on, taken off, and put back on. Only 11 days old when the first casts were applied, she would not have a "real" bath until she was nearly 6 months old. Finding a car seat that she could fit in with the casts on was just our first challenge; Emily soon learned how to kick her casts off. By the time she was six months old it was not uncommon to put on a new cast in the morning, only to return the next morning, or even that same afternoon for a new one. Braces and appliances were tried and rejected; Emily was eight months old when we realized that we knew more about her condition(s) than most of the medical personnel she saw daily did. We knew we had to do something... had to find a doctor who specialized in pediatric orthopedics. We also knew time was running out quickly... while her left foot had responded well, her right foot was clearly going to require surgery if she were to ever walk.

By the time Emily was 10 months old we frantically called our local Shrine Temple, to beg for a consult, a second opinion with one of the doctors, a specialist at the Hospital. We knew they were pediatric experts, but thought we wouldn't be eligible for the program. We would pay, we told the receptionist -- we have insurance, and we'll do whatever it takes... could she just please tell us how to get an appointment? Her reply? "I'm sending someone out to see you", she said. Enter our first Sponsor, Jim Lewis. Jim is a soft-spoken man with a quick smile, and a heart that must be bigger than Texas when it comes to kids. He sat on the floor and played with Emily, while he talked with us about what the Shriner's could (and couldn't) do, and walked us through the paperwork. We told Jim we wanted to pay, that we had excellent insurance, and we were willing to pay anything to get Emily the care she needed-- and he told us that her care would be the same price as all the other patients -- free! He said that the Shriner's only care that the child is less than 18 years of age, and that they can help the child. Jim said that the Shriner's do not care about religious affiliation, or ethnic origins. He told us that the Shriner's Hospitals are all privately funded -- no insurance, no government handouts, no Medicare payments... He told us about the vans that the Shriner's drive the patients to the Hospitals for the children's appointments, (again, at no charge to the patient) and how they give each family a motel room of their own when they get there, (again at no charge to the patient!) and then drive them back home again the next day after they are done at the Hospital. (again, no charge...) He took pictures of her feet to send along with the completed forms, and then he left -- and left us with hope for the first time since Emily had been born that we might finally be on the right track.Christmas 1994 was Emily's first -- and that week we got our acceptance letter with the date of Emily's first appointment at the Hospital in Shreveport.

We made the first trip to the Shreveport, Louisiana Unit of the Shriner's Hospital for Children, in January of 1995. I was so nervous that I cried all the way to Shreveport! I was terrified that at the Hospital they would turn us away, and tell us there was nothing they could do. When we arrived, we found the Hospital was a wonderful, cheerful, cozy, happy place, with children running and racing about on two legs and four wheels! Everyone we met, everyone we worked with had a smile for us, and Emily was quickly passed from one adoring nurse to another! After her examination, Dr. McCall, the Chief of Staff, and now Emily's doctor asked us "What are you doing next month?" We told him that we were planning Emily's first birthday party. Dr. McCall told us that we would also be coming back to Shreveport for surgery.

Her first surgery was just days after her first birthday. She was so tiny as they wheeled her away, clutching "BearBear" her best Bear friend in one hand, and her binky firmly planted in her mouth...

Afterward, Dr. McCall told us "Don't let her stand or walk in that cast!" We assured him that would be no problem -- after all, she couldn't pull up, or stand, let alone bear weight or try to walk. Six days after we arrived home, Emily pulled herself upright, and stood with a huge grin on her face, only to hear us shout "NO! Emily! Sit down!" while we laughed and cried with joy. After that, there were more casts, and physical therapy, and then, the first set of braces. They were tiny, but then so was she... and she had to wear them all the time, every day.We put "jingle bells" on her first little shoes with those braces, and sooner than we had ever dared to hope, we heard the marvelous sound of them "jingling" all over the house! Every step she took was a victory, and every little jingle of those bells was truly music to our ears. A stranger asked us one day if we didn't get tired of hearing her bells... and with a big smile I assured him that I would never tire of hearing it, because it was the sound of Emily walking.

Less than a year after that first surgery, Emily walked into the Akdar Shrine Center so that we could make a donation, her little bells jingling, to a standing ovation from the Shriners. Have you ever seen more than 100 grown men cry? I did that night through my own tears of joy and gratitude, as I told them why Emily wore bells on her shoes. From that day forward, wherever we went it seemed a Shriner would appear with a huge grin, saying "I heard Emily walking!" People have asked me if it isn't depressing to go to the Hospital. But every time we go, I get to see another miracle. I get to see a child take his first steps on new prosthetic legs. I get to see a child eat her first meal with her new state-of-the art myoelectric hand. I get to see a child sit unsupported on his own for the first time, or stand wobbly but proud in her walker, ready to go. And every time, the therapists and nurses and doctors are there -- cheering them on, excited and proud. In the eleven years we have been going to the Hospital, I have never yet left without seeing a miracle. But perhaps the biggest miracle of all is the one that we don't really "see". It is the incredible devotion and love that the Shriners themselves give to keep all the Hospitals going day in and day out. The Shriners Hospital System is funded entirely through donations... Currently, they operate 22 Hospitals nationwide on a total budget of less than 2 million dollars per day! No tax dollars, no insurance payments, no fees. Just a whole lot of love.

Emily is now eleven years old. She has never met a Shriner she didn't like -- and she has met many of them during our many trips to the Hospital at Shreveport, and working with the Akdar Shrine Center on fundraisers locally. She runs to each of them, arms outstretched, ponytail flying, to tackle them with a bone-crushing hug, and a smile that lights the room. At the Hospital, we always make our "rounds" -- there is the crew in Orthotics and Prosthetics who has been fitting Emily with shoes, braces and orthotics since her very first pair. There is Miss Sharon and all of the "Breakfast Ladies" in the Cafeteria, and Miss Robin in Family Services who is never too busy for a hug. Her favorite counselor, Heidi, and all the nurses who clearly love not only their jobs, but also all the children they see every day. And of course, Dr. McCall, who you'll likely find sitting on the floor with Emily or another patient, talking and laughing. There will be more physical therapy, surgery, hard work, pain, and tears that lay ahead for her.She will be treated as a patient in the Shriner's Hospital System at no charge until her 18th birthday. But she CAN walk, run, skip, hop, dance, ride her bike and her scooter. All because of these wonderful people called SHRINERS!

Emily no longer wears her bells... at the ripe old age of 11, as a "tween", she is far too sophisticated to wear them. But as long as I live, I'll never forget that sound, that wonderful sound of those little jingle bells as my little girl walked, and ran, and danced.The greatest testimonial that we can offer about the care that Emily has received through the Shriner's Hospital Program is the comment that many people make upon meeting Emily for the first time:

"But look at her! You would never know that... She looks so NORMAL!"

Exactly. That's the whole point of the program! To arrive where Emily is today -- at normal. Emily truly is a Shriner's success story, and there isn't a day that goes by that we don't thank God for the Shriner's. Because without them, Emily's story would certainly have had a different ending.

Thank you, Shriners everywhere!

Now that Emily is "on track" I try to help raise funds and awareness for the Shriners... You can help, too! By donating money to the Hospitals, or your local Shrine Center, you can help other kids like Emily have their own miracle, and find their own little piece of "normal". You can join the Shriners (and have a lot of fun, while helping kids like Emily) or you can spread the word about the wonderful work that the Shriner's Hospitals do. I hope you'll join me in supporting the Shriners work today!

You can read about what an average trip to the Hospital is like for Emily

You can visit our friends at the Adkar Shrine Center on the Internet anytime!

For information regarding The Shriner's Hospitals for Children, please call 1-800-237-5055, between 8:00 am & 5:00 p.m. Central time, Monday through Friday, or contact your local Shrine Temple, or any Shriner.

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