South Congaree, SC – 02/19/2021 (Paul Kirby) – Legend Darius Davon Kelly is a special needs student at Congaree Elementary. All his life, he’s suffered a horrible, debilitating disease that has prevented him from walking, speaking, eating or breathing like most of his fellow students. Now, at what doctors say is the end stage of his life, his mother Lana Lee says she’s amazed at how many people Legend has touched in his five short years.
Before Legend was born, doctors noticed there was something different about him in his mother’s womb. His head was far larger than his body. Eventually, it was determined that Legend had a rare degenerative disease called Hydrocephalus and Cerebral Palsy. He had to be taken from his mother by surgery long before he was full term because the fluid that surrounded his brain was making his head so large that he was endangering his mother’s life. He spent the first months of his life in the NICU at MUSC in Charleston.
“Legend has the rarest form of Hydrocephalus,” his mother said during a recent interview. “I was told right after he was born that only 1 in 100,000 children had what Legend had in the form he had it. They let me know when he was born that he would deteriorate and eventually leave us before he was grown. Now, as the time for Legend to go home draws near, it’s so easy to realize he was an angel sent from God to teach us that any problem we face isn’t so bad,” she said. “Here lately, it just seems as if his work on earth is finally done.”
The fact that Legend can’t speak, has a drain in his head to remove fluid from around his brain, and struggles to swallow or breathe would be more than most anyone could bear. Still, according to Legend’s mom, he’s has this shining spirit that has touched so many people. “Thousands of people know Legend and what a great little boy he is,” his mom said. “Very few know what he’s been through, how much pain he’s in, and how hard he’s had to fight just to stay alive. He’s really a remarkable little boy.”
Legend’s mom says one of the lessons people get from him is that we need to all be better people. “When you’re having a bad day, when a kid gets in trouble at school or at home, when their phone gets taken or their favorite toy or game breaks, Legend’s presence will prove that things can be much worse and you’ll still be okay,” Lana said. “He’ll have that smile even when that’s all he can do, smile!”
Lana believes that Legend had another job to do when God put him on earth. Hydrocephalus, a neurological disorder that allows fluids to build around the brain, is not one of the “fashionable” diseases. “It’s terrible, debilitating, and deadly but you never see people walking for a cure, printing t-shirts, or having 5Ks to raise money for research. It’s not like breast cancer, heart disease, or even autism; few people have ever even heard of it,” according to Lana. Because of its obscurity, there’s very little money and research to find a way to stop this horrible disease. Lana said, “I think that God sent Legend to touch people and make them aware of this horrible disease and the pain and misery it causes those who suffer from it. Once they read about Legend, maybe they will help with that.”
Lana has two other children, a daughter who’s 3, and a son 13, but little other help except her aunt. Legend’s father died of a sudden heart attack at a young age when Legend was just 8 months old. “My 13-year-old son and I have been Legend’s primary caregivers and it’s been incredibly difficult. I’m actually from Georgetown but moved to the Midlands because the hospitals Legend needed were here. I lost my house, my job, everything so I could care for my son. It’s been heartbreaking to just sit and watch him slip away,” she said.
Now at five years old, Legend’s end is drawing near. “I pray every day but at this point, the doctors have told me to be prepared. Legend is tired, his work is done, and he’s ready to go to a perfect place where his little body will be whole again.” When asked if she thought Legend knew Jesus Lana paused and said, “I think he’s an angel sent from God. I know he’s a child of God and I have no doubt that he’s going home to live in heaven with his father and Jesus.”
Several weeks ago, Legend’s heartrate became erratic. He lost control of the few bodily functions he was able to control. His doctors diagnosed him as end stage and assigned him to a hospice program. That week, his little heart struggled, and he fought to breathe. Lana said you could watch Legend and see is little broken body was just tired and ready for rest. He gets so little rest here on earth because of the work it takes
for him just to live. “Doctors told me there was no scientific hope for Legend, this had run its course. They told me to take him home and make him as comfortable as possible. I took him to our $600 per month rented mobile home and cried as I watched him try and breathe. It’s been heartbreaking to see my child like this. In my heart I know he’s ready to join his dad and all who’ve loved him that have gone on ahead. Legend is ready and prepared for the rest; you can see it in his eye.”
His hospice caretakers have told Lana to get ready. That way, once Legend is gone, Lana can focus on celebrating his life, not worry about his earthly body being held somewhere while she finds the resources to take him home to Georgetown to lay him beside his father’s grave. “It’s been hard to do but we made a GoFundMe to try to raise some money like the hospice people said. I don’t have anything. I can’t afford a funeral. I gave everything up to take care of Legend.”
Although Legend seems ready to leave, Lana realizes that everything is in God’s plan. “Even though I am trying to raise money like the hospice lady suggested, I still pray for Legend. Last weekend he stabilized a little bit. It could be days, weeks, even months, God will decide. As long as he’s here, anything that people give will go toward making Legend comfortable. When God makes the call, we’ll take him back to Georgetown.”
If you can help Lana Lee Kelly prepare for Legend’s departure and final rest, you can donate to this GoFundMe at https://www.gofundme.com/f/the-celebration-of-king-kelly.