Who is Casey? Why should you "Stand With Casey"?
Casey is someone you would be proud to call your daughter.
She is
- An Experienced Leader and lifelong healthcare Advocate for Muscular Dystrophy Research
- Highly regarded for her patient-care work
- Received a Commendation for her outstanding dedication to patient care and she
- Champions Patient Rights after seeing how others continue to struggle for needed additional services for her patients as well as others in the rare disease community.
Standing With Casey means that you:
- Stand up for Rare Disease Patient Research
- Your money goes to researchers and projects that forward the understanding and development of treatments and cures for patients with rare diseases.
- Want legislation that protects patients with rare diseases so they have equal access to health care as others.
- Your gift gives rare disease patients a voice in Rare Disease Day on Capitol Hill
Please make a generous gift to support Casey's-Cure and the rare disease community that is 25 million people strong.
About Casey
Casey's arrival brought laughter and light into our home...
Casey was just a joy to have. She was a smiley, happy baby who loved her brother; he could make her laugh like no one else, still to this day... and that sparkle? It is still shining through her today!
One day, when Casey was about 3 or 4 years old and dressing for nursery school, she said to me, "Mommy, my legs hurt. Can you carry me down the stairs?" or "Mommy, my legs are so tired... can you carry me?" I took her to the doctors but was always given the same answer: just growing pains.
Something funny about her: she hated being 7 and couldn't wait to be 8. We never did figure out why... But by the time she was 11 or 12, she would begin telling me that she didn't like running. It seemed so hard for her. But that didn't stop her. She played softball in high school, but preferred to be in the pool, racing and winning in our small community organization.
Her dad and mom's divorce at the age of 4 ended up having a far bigger impact on her than we could have ever foreseen. You see, her father had been developing weakness in his legs and arms and started wearing leg braces to help him walk. But in the '80's and 90's, technology didn't exist that could identify which form of Muscular Dystrophy he may have had. The doctors couldn't quite figure out how he got this either; no one in his family had any history of any medical condition resembling Muscular Dystrophy. As his health declined, Casey jumped in at the age of 17 and never looked back, never thinking that she herself could suffer this same fate.
After graduating from high school, Casey attended nursing school, mothered her young son, took care of her dad, and studied until the wee hours so she could go on to get her nursing license. After graduating, she used everything she'd learned to make her father as comfortable as possible. Being bed ridden and having a tracheotomy to provide for his breathing assistance required him to have full time nursing care. Casey never hesitated to fill in for any nurse who either didn't arrive or didn't fulfill the duties to Casey's expectations.
Life would go on to have Casey marry, have two children and move to Georgia where she worked in a nursing home, making a difference in the care of the elderly and sick residents. Casey won accommodations for her dedication to her work and her patients.
EMTs applauded the emergency care she provided. But after about two years, she began feeling tired. She knew she'd been pulling long shifts because the facility was understaffed, but something just felt 'off'.
It was then that she was welcomed into the Wellstar West Georgia Medical Center's family. She was hired to work in a pulmonologist's office where she continues to be an outstanding performer, receiving honors from her patients and co-workers for her persistent willingness to go above and beyond for them, all the while, none of them ever knowing of her growing struggle to walk around the office in order to manage her doctor's patient load effectively.
When the tests were ordered and the news arrived, the genetic test said that gene #603689, on the TTN protein chain, was damaged. She had inherited her father's muscular dystrophy. And it now had a name: Hereditary Myopathy with Early Respiratory Failure, HMERF.
It was a shock at two levels. Her father's doctors had assured us that only males would manifest the gene and that girls could only be carriers; Wrong on both counts.
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