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Faces of the Foundation:
2015

Condition:
Dwarfism

Resources:
Mayo Clinic

U.S. National Library of Medicine

WebMD

Little People of America

 

Donate

Back in December 2014, Cathy (Cassidy’s mom) and I were introduced by some common friends. I learned Cathy is a single mom, raising her beautiful daughter, Cassidy in Florida. In February 2015, Cathy posted a message that was heartbreaking! She said that Cassidy had not had a playdate since October 2014. She went on to say that Cassidy asks all her friends to do things, but they either say no or if they say yes, they don’t show up or call to cancel. Cassidy told her mom that she doesn’t even want to wake in the morning because she is so lonely.

After reading Cathy’s post, I called her mom. She said that Cassidy has many health challenges since birth, has very low self-conscience and struggles with feeling different (you can read about Cassidy on her mom’s blog below).

I shared that the foundation was going to feature a monthly “Face of the Foundation” and we wanted Cassidy to be our “first Face”. Her mom was excited and at the March 7, 2015 event in Denver, “An Evening to Remember” I told the audience Cassidy’s story asking them to support Cassidy and let her know that she has many friends in Colorado. The audience responded with a resounding yes!

The parents of our World Ambassador Samantha Stevens, Brian & Kathy Stevens then offered to take Cassidy & her mom to Disney World with their family later this summer. We will be starting a blog for Cassidy in July so that she can share with all of her new friends and supporters what she has been doing.

Cassidy’s Story

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Cassidy was diagnosed with Conradi Hunermann Syndrome, a form of dwarfism that affects the long bones on only one side of the body. Born premature at 34 weeks with cataracts, glaucoma, and a type of ichthyosis and was deaf until about 4 months old. She had her first surgery at 6 weeks old to place an artificial lens in her right eye, make her pupil larger, and remove the cataract in her right eye. Her right eye is considerably smaller than her left and deformed. Since birth she has had many surgeries, including the cataract, glaucoma, Chari decompression. She was fed with an NG tube for several months until she was strong enough to have surgery for un-tethering of her spinal cord, VEPTR (expandable rods in her back) placement and expansions of these rods. The VEPTR devise was an epic fail. Her rods broke through the skin on her back to the point she had a gaping hole where you could see all four sides of the rods. Her being so tiny they had to pull skin from around her side to cover the hole which didn’t last long. The rod came right back through the skin and needed a plastic surgeon, a cardiologist and her orthopedic surgeon to fix. I finally found her life saving orthopedic doctors in La Jolla CA. this team of Doctors removed the VEPTR rods which by now we’re floating freely at the bottom of her spine, she was placed in halo traction for 2 weeks. She weighed 29lbs and had 15lbs of weights attached to the halo. A lot for this 5 year old to endure.

A year later we traveled again from Phoenix AZ where we lived, to La Jolla for Cassidy to have at this point, her final back surgery to get as much chest cavity space as possible for her to avoid more life threatening respiratory issues in the future. The only thing to do to keep her healthy was another resection and a complete spinal fusion. At this point her ribs and spine had started to fuse on their own. All this took place at just 6 years old. At one point her scoliosis (side to side curve) was at about 90 degrees and her kyphosis (back to front curvature) was at 134 degrees. Severely interfering with her lung capacity. Her bouts with pneumonia and RSV are a thing of the past since her spine was fused and permanent rods were placed.

In August 2014, at age 10, Cassidy underwent leg lengthening surgery to correct the 2″ right leg length discrepancy on her she was born with. An external fixator with 6 pins was attached to her femur and was used to separate the femur which was cut in half, a little every day. On Dec 11th 2014, the pins and fixator were removed. Unfortunately when she went for her first post op, the femur broke at the new growth spot. It was not as solidified as the X-ray looked. The femur was pushed back into place and a cast from toe to hip was put on. A week later on her 2nd post op, it was broken further. After 4.5 months of being in a wheelchair and walker she was going to endure another painful surgery to place a rod into the right femur from the hip to just above the knee. She is recovering nicely now, going to physical therapy 2-3 x weekly and looking forward to the day when she can walk by herself again without her walker and to run and play.

Through all of this Cassidy has always been a happy, loving and kind child. If you ask her what she wants to be when she grows up, some days she says she wants to be a pediatrician, but most days she wants to design fashionable clothing for little people of all shapes and sizes. A true girly girl, who likes sparkle, glitz and looking pretty while singing and taking selfies. Cassidy’s favorite movies and characters are My Little Pony, Monster High and Frozen.

Cassidy’s Photos

Cassidy’s Blog

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