My loving daughter…Leslie
Hi, my name is Allisa Whitt and I would like to let everyone know that my beautiful daughter Leslie Cora Whitt-Williams passed away on October 21, 2012 at the age of 24. She was born on June 17, 1988. She meant the world to her parents Roy and Allisa Whitt, her sister Megan Whitt and her husband of 16 months Jeff Williams.
She was diagnosed with GAII at the age of 19 but, the further her disease progressed they were unsure which FOD she had. Her blood, urine, skin biopsy and muscle biopsy all showed a different type of FOD. They knew she had Mitochondrial Disease but they were unsure which one she actually had. Some doctors believed she had a Mitochondrial Disease as her primary diagnosis and then GAII as her secondary diagnosis. Whatever it was it took my very smart, funny, loving heart of gold daughter.
Leslie was such a fighter. The last 2 years her disease really progressed and fast. She started out with a g-tube for tube feeding, then went to a separate j-tube for feedings because her stomach could no longer tolerate the feeds. She then had to have a hickman catheter placed in her chest for TPN (total parental nutrition). She had been on TPN for 24 hours a day for the last 21 months. She was on oxygen 24 hours a day for the last year. She had a foley catheter in because of all the UTI’s and neurogenic bladder. She was on all IV medications because her gut had totally shutdown and the medicines were not being absorbed. She was always hooked up to something. She used a wheelchair for the last several years. Leslie was also hooked up to 2 different PCA’s (pain pumps). She had been receiving blood transfusions monthly for the last 16 months. With all that she was hooked up to and all that she had going on she never complained. She always had a smile on her face regardless of how bad she felt. She never said “why me.”
The last several months I could see that she was progressing but, I didn’t want to accept it. She was in a lot of pain, having more and more seizures and infections that her body just couldn’t keep fighting anymore. She was such a mito warrior. She inspired so many people. Her Neurologist came to her funeral and even he was crying. He told me that Leslie was such an inspiration to him. She had so many teachers from all of her schools from elementary to high school attend her funeral. Leslie really touched a lot of people’s lives and I am so proud to call her my daughter. We had so many people come up to us at the funeral home that night and tell us what a wonderful and inspiring daughter we had. Leslie was valedictorian of her high school and went on to attend Case Western University for 1 1/2 years before leaving from failing health.
I still can’t even speak her name without crying. Her and I were so close. We did everything together. I took care of her even after she got married. I traveled 1 hour each way to her house to take care of her while her husband worked. I drove her to Akron, Ohio once sometimes twice a month for all of her doctor appointments which is 4 1/2 hours one way. The last 6 weeks when she was getting worse I lived with her and her husband taking care of her 24 hours a day. I would not change a thing. The only think I would change if I could would be to finding the right doctors sooner.
In August she had her dream granted from The Dream Foundation and she was able to meet Reba McEntire in Atlantic City. It was a wonderful experience that Leslie almost didn’t get to do. The night before she was to meet Reba she had a major seizure and was unresponsive for 3 hours. All the doctors thought she wouldn’t make it out of it but, she proved them wrong. She was so strong and such a fighter, she was bound to determine to meet Reba McEntire. The last several months we went on a lot of trips and accomplished quite a bit of items from her bucket list. I wanted to make sure that she had the best time of her life.
It feels like a part of my heart has been ripped out and I will never be whole again.
Leslie will be greatly missed, but she will always remain in my heart forever.