by Terry Rogers
Cenzy Thornton, a two-year old Lincoln girl, recently spent time in ICU at A.I. duPont Children’s Hospital undergoing treatment for Tay-Sachs disease. It is an illness so rare, it is believed to be the only case in Delaware. Cenzy cannot speak, walk, sit or stand on her own and has difficulty holding her head up.
“The room she had in our home was more of an office size,” Kristen Thornton, Cenzy’s mother, said. “Her room fit her crib, a dresser and a few of her medical supplies and it is also upstairs. With her room upstairs and our room downstairs, it was hard to get to her in emergencies. We also drag her heavy medical equipment back and forth when she is downstairs in the living room for the day. We needed a new room for her that was downstairs. We had actually reached out to a national organization for help, but they turned us down. The Good Ole Boy Foundation is a great blessing and we are so grateful for this amazing opportunity.”
The Good Ole Boy Foundation was founded to mobilize the community in order to unite resources and assist families during times of unforeseen difficulties. The organization works with families who are facing tough battles, whether due to financial hardships, tragic accidents, house fires, illness or other tragedies. When the group heard about Cenzy’s need for a new room, they posted a call for help on Facebook.
“We have assembled a core of guys who know construction to coach us along,” the post read. “Experience is not necessary, but we could really use your help. You guys with framing and building decks, we could really use your talents. Let’s make this happen.”
On Thursday, May 21, the foundation for Cenzy’s new bedroom was complete using donations of materials and time from JNA Masonry & Concrete LLC, Parker Block and Atlantic Concrete. On May 24, the volunteers gathered again to set poles for the deck and wheelchair ramp as well as to start the framing of the new room. On Saturday, May 26, what the group called the “big build” took place.
“It was an awesome day at the Cenzy Build,” the group posted. “The team that came out was ready to work and boy, did they ever. We had individuals from all over the state show up and some even traveled from Ocean City.” By the end of the day, the group needed assistance with completing the insulation and a small plumbing job as well as to put on the siding. Those projects were expected to be completed over the next few weeks.
Tay-Sachs is a rare inherited disorder that progressively destroys nerve cells in the brain and spinal cord. The genetic issue is more common in eastern and central European Jewish people, some French-Canadian communities of Quebec, Old Order Amish communities as well as some Cajun populations in Louisiana. There is no cure for Tay-Sachs disease, but there are treatments that can address symptoms.
“Cenzy loves being in the sun and feeling the breeze in her hair,” Thornton said. “She enjoys spending time with her family and our crazy dogs. Cenzy loves traveling and we don’t let her disability and medical equipment stop us from taking her everywhere we can. She just requires a little more luggage than the rest of us. Cenzy has a feeding tube and is on a ketogenic diet to help with seizures. She also has nursing care during the day and overnight to relieve some of the work. We spent several rough weeks in A.I. duPont, but she is slowly turning around for the better and looking forward to going home, but with more medical equipment, so this could not have come at a better time for her.”
The Good Ole Boy Foundation welcomes donation and volunteers. Learn more about them at www.goodoleboyfoundation.org. Learn more about Cenzy’s journey on her Facebook page, Cenzy’s Corner.
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