Lesley was born on
October 1, 1992. Her older sister was 5 and had always been the picture of
health. We had no reason to suspect that Lesley would be any different. It
didn't take long for us to begin thinking otherwise. Les cried more than she did
anything else. The doctor's assured us that it was colic and that the fussiness
After 6 months it did ease up a little, but she was still far from your happy average baby. At 9 months she developed constipation. Every 4-5 days she would scream and cry in pain while she had a bowel movement.
At 12 months she had an enormous appetite. She was quite chubby. Everyone said she should be the Gerber Baby. She appeared to be delayed in her gross motor skills like walking, but we just figured it was because she was heavy.
At 18 months she got a virus. Within 10 hours of the onset, she was dangerously dehydrated. Dr. Hamrick at WCMH sent her by ambulance to SMH where Dr. Tomsho took over her care. We spent 4 nights in the hospital with extensive testing being done. We all felt that she dehydrated too rapidly but the tests only showed Rotavirus. Lesley was still not walking at this time so Dr. Tomsho felt that she should be under a pediatrician's care.
After that illness Lesley got worse. She was labeled as failure to thrive, she quit eating, she vomited 5-6 times a day. She lost weight. She was very sick.
On July 16, I prepared to take her back to Tomsho. She was sick again and I was exhausted and (out of my mind with worry). I had searched medical books trying to find something that went along with her symptoms, but I wasn't a doctor. On the way out of town, I stopped by mom's to tell my sister good-bye. She had been in from Ohio and was leaving that day. She asked me if she could bless Lesley with Holy Oil. She said that when she was getting ready to come to WV her bottle of Holy Oil, had all but fallen into her purse. She knew she had to bring it with her, but wasn't sure why, until she saw Lesley. As she made the sign of the cross on Lesley's head, she asked God to give the doctor's the wisdom to find Lesley's illness. She then made the cross on my head and asked God to give me the strength to accept whatever the answer might be.
During our visit, Dr. Tomsho did some blood and urine tests. Before we left the nurse brought the results in from the urine tests. It showed that Lesley had blood, protein, sugar, and acid in her urine. This raised an eyebrow or two. Dr Tomsho immediately sent the urine sample to the main lab to have it analyzed further.
On the next day, he called me at home and said he thought he had found the problem, a kidney disease called Fanconi Syndrome. This can be acquired or inherited and now we needed to find out which it was. The next day we returned to the hospital and had several more tests done. Dr. Tomsho explained the different possibilities including Cystinosis. Because Cystinosis was inherited and Bennie nor I knew of any such disease in our families, we did not expect it to be the culprit. It occurred only in about 1 out of 250,000 births, and there were no known cases in WV with only about 200 cases in the U.S. at that time.
The following Thursday we went to Dr. Lackey's office. He explained that he would be looking into her eyes to see if she had crystals in her corneas. If she did it meant she had Cystinosis. He told us that he had worked in a 5,000 bed hospital and had only ever seen one case of it. However, it didn't take but a moment for him to pull away and say, "I'm sorry, she has them."
Back at Dr. Tomsho's office he explained what the disease was. I don't remember too much of what he said, I was too busy crying and not believing this was happening to us. So much happened after that day. We saw several more doctors and Lesley began taking a lot of medication. One of the meds was not yet approved by the F.D.A. She immediately gained strength but still vomited constantly and could not keep the meds down. She continued to lose weight so it became obvious that she would have to have surgery for a feeding tube. Right after Thanksgiving she was admitted to the hospital and had a ph probe done to determine if she had reflux. This involved putting a tube down her nose into her stomach and leaving it for 24 hours. That test was negative so the next day she had surgery. It was the most horrible experience I had ever encountered. The look on her face, the smell of the room, the thought of not being able to hold her during this, was all so horrible. She did fine with the surgery and after a night in ICU and a few more days in the hospital, we brought her home. That was scary. Here we were with this machine and a baby who was still sore from surgery and so fragile.
For the first few weeks I remember laying in bed beside her and listening to the machine pump nutrition into her little body. That was my baby, my child, and I could not control what was happening. I was terrified that I would do something wrong!
In January of 1995 she was hospitalized again for dehydration.
The year Lesley was diagnosed my parents split up. They had been married nearly 40 years and my Mom was devastated. It was hard for me to focus on their problems because Lesley was so sick. At times I was furious with them. I kept thinking, "how can you dump this on me now?"
In March we spent a week at the National Institute of Health where a doctor specializing in Cystinosis was in residence. All this time I was fighting to get SSI for Lesley. There was no way we could afford the medical expenses even with insurance and the bills were overwhelming us.
Lesley did better physically for the rest of 1995. It wasn't until the next year that she was hospitalized again, right at Christmas. She got sick the day before Christmas and ended up in the hospital. We went home on Christmas Eve but she was so sick and weak that the gifts I had spent months picking out, meant nothing to her, she didn't even open them. It was heart-breaking for us all.
By 1997, our expenses were overwhelming. My husband was the only one with an income and we just couldn't make ends meet. Sometimes we would have to decide which bills would be late so that Lesley could have her medicine. I just wanted to be able to pay all the bills and eat. Medical expenditures for anyone else in the family was not an option.
It was at this time we decided to move in with my mom. Mom wasn't doing too well at being alone and this way we would not be responsible for a house payment. It turned out to be a good deal. We were the company and companionship that Mom needed. We saved $400.00 a month that we could use for expenses. Living with Mom was a blessing. We shared the household chores and the care of the girls.
Lesley started preschool in 1997. She enjoyed it and did well and I had a few blessed, quiet hours. The only problem with school was when other parents would send their children who were ill. They did not understand that a virus that lasted for 24 hours in their child could cause Lesley to become extremely ill or be hospitalized.
It was at this time that we were able to move back into a home of our own. Bennie had a steady job and our finances were manageable
By Kindergarten Lesley's immune system was stronger. However, I now had to go to school every day at noon and give her medicine through her feeding tube. Many afternoons she would have to sit in her chair by the trash can because the medicine made her sick.
Les's health was stable enough at this time when I was offered a full time job I jumped at the opportunity. With us both working for the first time we felt we could keep our heads above water. This was short lived because Bennie got a raise and the increase in income would put us over the allowance for SSI. Without SSI coverage we could not afford Lesley's medication. I had to quit my job.
Lesley has not had to be hospitalized since 1995. She has had illnesses but she is a littler stronger and a little better at coping with them. She goes to school. She is now in first grade and does great. She takes 6 medications every 6 hours. She still gets hooked up to her feeding machine every night. She is quite small, has high blood pressure, an intolerance to heat, and she tires easily. She uses the bathroom frequently and drinks gallons of liquid each day.
She now has a pal in Clendinin, WV who also has Cystinosis. Chelsea, who is 10 months older than Lesley, was diagnosed in the early part of 1996. Every three months they make the trip to Charleston and have their blood work done together and then go to lunch and shopping.
Lesley is a special kid! She knows about her illness and sometimes gets upset and says, "Why do I have to have stupid Cystinosis?" Les often gets angry when people comment on how small she is. She wants to be treated "like her age, not her size."
During all these ups and downs I began going back to church with the girls. I had them baptized and my older daughter received her first communion. Without realizing it, I began drawing strength from God. I no longer asked why. It was not the most important question. I received many signs from God that He was with me. The first time was when Lesley was diagnosed On another occasion when Lesley was sick again, I hurriedly packed clothes and gassed up the car. When I ran into the store to pay my bill, a man who was standing outside the door handed me a small booklet. Annoyed, I just shoved it in my pocket and raced to the hospital. Lesley was admitted and fell into an exhausted sleep. It was then I pulled the booklet out of my pocket. The front cover said, "God Loves You." I tried to remember the man's face who gave me this book but for the life of me I could not remember one thing about him.
Lesley has taught us so many things. She is one of God's children. I believe she was given to us as a gift and Bennie and I were chosen to be her parents. Lesley has shown us how to rely on our faith, how to keep things in perspective, and how to appreciate every moment our family has together. Sibling squabbles, taken for granted by most families, are just another step on the road toward a normal life for the Cogar family. We cherish our Lesley and we hope and pray that the future brings us a cure for her condition.
We are currently trying to raise money for research through the Cystinosis Foundation. Not long ago I was discussing the amount of money raised locally. Lesley smiled and said, "When will we have enough Mommy?" I wasn't sure how to answer that question. I do pray every day that it is soon and I pray that our contributions play a big part in finding a cure. I would give anything for Lesley's life to be normal and Cystinosis be a disease of the past.
To contribute to the Cystinosis Foundation
make checks payable to:
The Cystinosis Foundation
2516 Stockbridge, Drive
Oakland, CA. 94611
Lesley's Patron Saint is St. Theresa of the Child Jesus who is also known as the "Little Flower." St. Theresa said, "We are all flowers in God's garden." Lesley is a very delicate flower that needs extra love and care. With God's help Les will grow and blossom. We pray that as St. Theresa leads us into the new millennium, breakthroughs in research will allow Lesley to have a long and fruitful life.
St. Theresa -Little Flower
"In God's garden, we are all flowers."
Feast Day - October 1 (Lesley's Birthday)
Lesley's email address is:
Lesley's address is:
P.O. Box 224
Webster Springs, WV 26288
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