Leslie Vincent and her daughter, Olivia
Relying on the heart: Vermilion Parish Mother collects from hunters to help daughter
Here in Louisiana, people mostly live off of the land. From deer hunting, duck hunting, and fishing to rabbit gravies, fresh chicken eggs and the normal garden veggies, tables and bellies are always filled with the plentiful goods that come easy with hunting and farming. But one family in Vermilion is relying on certain parts of the animals that are sometimes disregarded after processing the meat.
Every year during deer hunting season, Leslie Vincent asks hunters to save organs including liver, kidneys and hearts in an effort to restock her freezer to make her daughter Olivia’s food for her feeding tube. Usually, the turnout is great.
The diet, based off of the Wahls Protocol Diet, was suggested by another mother from San Antonio who had a child that was very sick with the same disease Olivia has; a rare and progressive genetic terminal dystrophy, so rare that there are only 25 cases in the US and nearly 100 cases worldwide.
Neuroaxonal Dystrophy (INAD) was a diagnosis that scared Leslie. After much research, Leslie knew that what her daughter Olivia would have to go through would be nothing shy of a hard life. Refusing to give up, Leslie reached out to other families and found out that the special diet would be the best option for her daughter.
The diet focuses on all natural, organic, grass fed animals and wild caught fish. “I make my own bone broth for her with grass fed cattle bone marrow,” Leslie said, “The diet requires a lot of time and effort to prepare since it’s all pureed, but it’s worth every second.”
The need for the organs are part of the protein in the special diet and Olivia gets organs through a feeding tube 3 times a week. Wild caught Salmon, organic chicken, turkey or wild game are examples of the proteins she needs.
Born with no problems, Olivia’s troubles didn’t begin until the age of 18 months as she began to fall a lot. After bringing her to several doctors that included neurologists and geneticists. For two years, there were tests after tests with no answers. Olivia continued to regress. “They told me I may have to settle for cerebral palsy as a diagnosis, but after doing research, I knew that was not what Olivia had as she began to develop, Olivia was able to walk and talk,” Leslie said.
After begging her geneticist at Oschner to send Olivia elsewhere so they could do more extensive testing, he said they may never find out what Olivia’s diagnosis is, but the dedicated mother refused to give up. After a couple of years, Olivia had the diagnosis of INAD.
Leslie would not rest until she found every bit of information she could get her hands on to better Olivia’s chances; even knowing that she would lose her daughter at a very early age. “At four years old, Olivia could only walk with a walker and wearing a helmet because of the falls,” Leslie said, “At five years old, she stopped talking and could only crawl and to hear her call me mama is what I miss the most, I wish she could call me mama.”
There is no cure for the disease since it is so rare, but since her daughter could no longer sit without assistance, having seizures, and choking on foods and liquids, it was decided to put a feeding tube in to give her the proper nutrition. “This was when we started Olivia on the Wahls Protocol Diet.” Leslie said. Since starting the diet, Olivia’s family and nurses noticed slight progress with the diet. Olivia was more alert and her seizures went away.
Though the disease has progressed a lot since then, Olivia’s seizures began to reappear. She can’t move any of her limbs or control her head, however, she does still smile and has a silly personality. “We are currently dealing with the seizures again and the seizure medications are making her lethargic,” Leslie said, “I’m just so scared that she loses her beautiful smile and silly personality. We both enjoy snuggles and even though it’s becoming a little hard since Olivia is now 12 years old and nearly the size of me, I won’t stop picking her up and rocking her.”
Leslie’s persistence in finding anything that will work for her daughter has led her to many places. But surely, being from Louisiana has benefited the family in many ways. Every year, Leslie reaches out to those farmers and to the hunters for the ‘leftovers’ in order to stock her freezer for Olivia. “There was another little girl who lived in Lyons Point that passed away a year ago in October at the age of 17. The mother of the little girl followed the same diet and we all got close to the family. I can’t tell you how hard it was to attend the funeral and see that child in the casket,” Leslie said, “It hit so close to home and reminded me of what my future will be like in the next 4-5 years.”
Leslie says she will do anything to help her daughter. Being a teacher at Mount Carmel, Olivia gets 60 hours of nursing per week, other than those times, Leslie is taking care of her daughter around the clock with help from her 16 year old son Ethan and other family members. “We have so much support. Olivia has taught us so much about the world and she teaches me how to be her Mama. I thank God everyday that he has chosen me to be her Mama. To experience the love of a special needs child is indescribable. It’s heaven on
Earth and Olivia is like one of my limbs that I cannot live without. Everything I have to do for her is worth it.”
Everything is worth it. Leslie’s mother, Bonita Hopkins, helps her once a month to cook and prepare Olivia’s food, which only lasts 3-4 weeks. An example of one batch of food for Olivia includes: 3 cups of leafy green vegetables, 1 cup of sulfur vegetables, 1 cup of color vegetables, 1 cup of bone broth, 10 ounces of protein, 1/2 of an avocado, a clove of garlic, strawberries, blueberries, shiitake mushrooms, crimini mushrooms and water.
Knowing that Olivia will not be here forever, she is still thankful for the time she has with her. “I know that Olivia will become sicker and I will have to be up with her several times a night,” she said, “I know that she will get pneumonia and possible hospitalizations and I know that I’ll only be able to work 2-3 more years, but it’s okay, everything we are going through has taught me to slow down and enjoy life with my son, who will soon be a VC student and Olivia, who changed me in so many ways.”
“Olivia speaks from her eyes and could turn the coldest of hearts. This diet is just a small way we could help her thrive.” Being from Louisiana, with the heritage of living off of the land and the hearts of the giving, Leslie is happy that people have no problem helping. “Its humbling and it will never be forgotten.”
