Taylor Nicole Mankins-Texas, born 9-13-90
Taylor was born perfectly normal and healthy in 1990. As she grew, so did our hopes and dreams for her. She excelled in nearly everything she put her mind to. She was a high performance child, always striving to perfect whatever it was she was doing. She has always loved to sing and dance and been a “social butterfly”, not knowing a stranger. She, from her earliest years has had an unshakable faith in the Lord Jesus Christ and has never been ashamed to tell anyone about Him. She has always been well-liked by most of the people who’s path she’s crossed and time and time again we’ve been complimented at what a sweet spirit she has. She’s a loving, huggy, hands on girl.
Late in her 4th grade year, I went to pick her up after school and as she walked toward the car, I noticed she had huge patches of hair missing from her head. For an entire year, she unknowingly and uncontrollably pulled her hair out while watching T.V. or sitting idly. We would find mounds of hair on the floor where sheâ€™d been. I had noticed that, to get her attention I would have to get between her and the T.V. but I thought she was tuning me out. She was embarrassed and ashamed of her appearance but was unable to stop. She always wanted to stand out and be noticed, but not in this instance.
In April of 2001, the day before Easter, Taylor was at the local Putt- Putt for a friend’s birthday party. She was playing a 3-D video game and went into a convulsive seizure. It was terrifying. I recognized what was happening but had no idea why. She had never had seizures before and, as far as I knew, had no reason to. I have no idea how long it lasted but it seemed like forever. I carried her to the bathroom and remember that I kept telling her to look at me and she would say “I am” but her eyes appeared to be pulling to the left. I helped her outside and we went to the emergency room. The ER doctors ran a CT scan and several other tests confirming that she had had a seizure and they sent us home with medication to help until we could see her doctor.
We were referred to a pediatric neurologist who gave her the diagnosis of Epilepsy and placed her on Zarontin. For an entire 9 months, she was seizure-free and the hair pulling stopped. She was doing great in the 5th grade, making good grades and winning contests, making friends and all the basics of a girl her age. She continued to sing and dance and was looking forward to playing the flute in band for her 6th grade year. We had to make several changes to her regular routine likeâ€¦“NO bicycles, NO tree climbing, NO baths, NO contact sports and so on.”
I’m sure many reading this can relate. All in all though, her life maintained a good sense of normalcy until Christmas break of her 6th grade year. She was 11 years old and began complaining of jerking in her arm. I immediately suspected it was neurological and contacted her doctor. Here is where the challenge got challenging. Now the process of prescription elimination began. Zonegran was the first to be added to the mix and that is when we began to lose her. Her grades sank. She slept all the time and every aspect of normalcy in her little life began to slip. We tried her on multiple medications all to nearly no avail other than to further sedate her.
The seizures continued as did the jerking with very little relief until she was finally placed on Keppra which did help some and praise God, had no negative effect on her. That was a first. Every time her prescriptions changed, we lost a little more of her in an effort to stop the seizures. At times she was unable to get out of bed unassisted. We had to revert back to dressing her and tying her shoes and even helping her bathe. After months of having little seizure control, the doctor ordered a list of tests to rule out any rare disorders. We were assured that the odds of her having any of them were one in a million. Some tests took weeks and others months but one by one the results were called out to us “NEGATIVE, NEGATIVE, NEGATIVE.”
Then came the call that the last results were in and “The Doctor needs to see you.” I said why does he need to see me, you always tell me over the phone. She said we need to make an appointment and I said I know what this means. Just tell me, please donâ€™t make me wait. I remember collapsing in the floor and screaming God, Godâ€¦though you slay me, I will trust you. By the time we saw the doctor, I was already braced for what I would hear. The diagnosis of Lafora was confirmed through DNA testing and there was so little information that we were given pages copied straight out of medical dictionaries on similar disorders but very little on Lafora itself. We were given a morbid list of what to expect in the future and at that point, made the decision to answer any questions Taylor had but not to rob her of her hope. She knows that the doctors say she should get worse and worse and ultimately die from this but she also knows that our hope is in God and He has the final say. His word says that she is healed and that His plans for her are to prosper her and not to harm her. His plans for her are for hope and a future. His plan is that she live and not die to declare His works. These are the truths we cling to. This journey has been and continues to be the ultimate test of faith in our lives.
We have watched our once healthy, active, over-achiever be ravaged by a horrible disease. She has suffered multiple falls resulting in broken teeth and blacked eyes, busted lips and knots on her head. She has endured postictal paralysis and amnesia. She has been rushed by ambulance when the oxygen her convulsing body was taking in wasn’t enough to sustain her and most painfulâ€¦she has lost the company of the friends she held so dear that donâ€™t know how to deal with the battle she’s fighting. We watch her struggle through even the most menial tasks like brushing her teeth or buttoning a blouse. She stops mid process and fights to remember what sheâ€™s doing or what to do next. It has been in the last year or so that we’ve noticed the biggest change. Her mind knows that she is 18 and she has all the drive of an independent 18 year old but her mind functions as a young child and her body will not cooperate. She wants to participate in sports but her legs move much faster than her brain is able to process. She falls frequently as she continues to fight for her ability to dance and when she wakes in the mornings, she can scarcely hold the cup to take her medication due to the jerks and tremors. The seizures have become more violent and frequent and on a daily basis, she converses with voices that no one else can hear. She is a dainty, but strong 110 pounds that refuses to let this thing beat her.
She graduated from public high school in May of 2009 and has opted to go back for an additional year to take refresher courses in English and Math and to work on job skills. When she is discouraged, I remind her that she has the hope of better things ahead of her. We have witnessed her mind slip in and out of reality on a daily basis and her body fails her regularly but I have never seen her faith so strong. Faith is after all, the substance of things hoped for and the evidence of things not seen. It is my strong belief that for every problem, God has provided a solution and for every disease, He has provided a cure. It is our job to seek out the matter. There is cause for hope in the treatment of this debilitating disease. It is my prayer that these doctors and scientists who work tirelessly to further this cause be blessed with wisdom and the finances to pursue the knowledge they gain.
Joy Beth Mankins- Mother of Taylor Mankins