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Before Molly Grace's sixth birthday party (September of 2009), her mother wrote this letter about our precious butterfly. Some of it was adapted from Caring Bridge posts, and some was written fresh.
http://www.curetay-sachs.org http://www.mollygrace.orgStory from Molly Grace’s Mom
Molly is receiving prayer from so many people. Whoever reads this I ask you to please pray for Molly, because nothing is hopeless with God. Molly Grace was born on September 26, 2003. She was born two months early and weighed only four pounds, not an ounce more. Although she was so small she was very healthy. After only two-and-a-half weeks in the hospital we got to bring her home.
I noticed early that Molly's milestones were behind, but her doctor kept saying she was delayed because of her being premature. Deep down I had a gut feeling it was something else—I guess it was a motherly instinct. As Molly got older, she became farther behind. At eight months old she still could not sit on her own or even try to crawl, and was just beginning to roll over on her side.
When Molly was nine months old she was diagnosed with Spastic Diplegia, which is a form of Cerebral Palsy that affects the legs and not the hands. Although she could not sit, stand, crawl or walk, she had good use of her hands and she could play with toys, attempt to feed herself, and clap her hands to music and when asked to play pat-a-cake.
We were crushed with her diagnosis of Cerebral Palsy—we wondered how such a perfect beautiful child could have something wrong—but we soon learned to accept it after seeing so many children at the children's hospital so much sicker than she was.
Around her first birthday she began having slight seizures and had to be put on medication to control them. Shortly after she seemed to be declining in what she used to be able to do. Her neurologist thought it was her medication making her drowsy. We spent six months changing and trying to get her used to new medication, but nothing seemed to help. She continued to get weaker and her seizures kept coming, several times a day.
At sixteen months old she could still play with toys and clap her hands, but she seemed to stop using her hands as much. She began to lose weight and seemed to be losing her muscle tone, despite all the therapy she was doing for the Cerebral Palsy.
At seventeen months she lost her head control all of a sudden, and would no longer use her hands. When I placed objects in her hand she could not hold on to them. I called her neurologist and she told me to bring Molly Grace in for a spinal tap to rule out a metabolic disorder. I had no idea what that meant and I was not really concerned. I was convinced it was her medicine making her so weak.
At eighteen months we received the devastating news. My beautiful perfect baby had a rare degenerative disease called Tay-Sachs. We had no warning ahead of time of what it could possibly be. Something deadly was the last thing on my mind. All of her prior tests from the spinal tap had come back normal and I thought that visit was just for a checkup.
When I took Molly Grace in that day, my plans were to tell her doctor to just wean her off of the seizure medicine because her seizures were only small ones. I took pictures to the doctor of Molly playing with toys, sitting up barely supported and eating her first birthday cake to show how much different she was. After looking at the pictures her doctor had tears in her eyes and said, “I have a diagnosis for Molly.” Molly's neurologist was four hours away in Cincinnati, Ohio and that day Mark was not able to go to the appointment with me. Luckily my sister had made the trip with us, so she was there to drive us home. It was the longest four hours of my life. Through the whole trip I was dreading having to go home and break the news to everyone.
The last thing I can remember about my conversation with Molly Grace’s neurologist is asking her, "How long does she have before she loses everything?" She replied, "Two to four years." For the first time in my life I realized what a real broken heart felt like. I had chest pains and actually felt like my heart was going to stop beating. No parent should have to get the news that their child is going to die.
After the diagnosis I had a hard time putting Molly down—I wanted to hold her as much as I could because I now knew that my time was limited. It was hard for me to look at my smiling, laughing eighteen-month-old and know that she would eventually lose even that ability. It was hard enough that she was unable to play with her toys like she could before. By this time she had already begun to have eating difficulty and it would take her so long to drink a bottle due to her muscle weakness. Finally I had an explanation for the weight loss. We scheduled a swallowing study right away and it showed that she had begun to aspirate thin liquids—we began to thicken her formula for her to be able to swallow it.
At nineteen months old she lost her ability to swallow any food without aspiration and had to have an NJ tube placed through her nose into her stomach to be fed. At twenty months old we had her g-tube placed to give her the nourishment that she needed.
When Molly was four years old, she had lost her gorgeous laugh and smiles only happened during strange seizures. She was blind and had lost all muscle control. I had not heard her cry since October, 2006 and she frequently got pneumonia from aspirating her secretions.
Now at the age of five years old Molly has been diagnosed with Atelectasis, which means her lungs continually collapse which is very painful. She can no longer maintain her own body temperature and she is on oxygen continually. I have been told that this is the end of this devastating disease and we have entrusted her care to the Lord, The Great Physician. However she is cured—whether He cures her here on earth or takes her to her mansion in heaven—I know I have had the privilege of being the mother of an angel.
Since April of 2005 I have dedicated my life to taking care of my Tay-Sachs child. I have informed just about everyone I come in contact with about Tay-Sachs disease, hoping to prevent it from happening to someone else. Over the years I have taken Molly into schools to teach people about Tay-Sachs, the biology of how it occurs and how a simple blood test can tell you if you are a carrier before you have children. The chance of finding a cure is possible and I owe it to my precious Molly to do whatever I can to help make that happen.
Tay-Sachs is such a rare disease, there is no treatment so the only hope Molly has is for a miracle.
Molly is receiving prayer from so many people. Whoever reads this I ask you to please pray for Molly, because nothing is hopeless with God.
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