WVU fan with Down syndrome beat cancer at 2, got sick again, lost father on Dec. 4
Kay Clark said the support for daughter Makayla, 17, has been overwhelming. Her Facebook page, "Cheering for Makayla," has more than 5,000 "likes" and is an easier way to keep people updated about Makayla's condition, Kay said. Makayla was born with Down syndrome, was diagnosed with cancer at age 2, became cancer free and is now battling post-transplant lymphoproliferative disorder at Cincinnati Children's Hospital.
CHARLESTON, W.Va. -- Makayla Clark has many people cheering for her.
Her fans wear T-shirts with her name splashed across the front.
Her Facebook page, "Cheering for Makayla," has more than 5,000 "likes" from some strangers, many friends and all of her family.
They used to support her from the sidelines when the 17-year-old Marmet resident shouted her chants as a cheerleader at Horace Mann Middle School and then Capital High School.
But today, they show their support by bringing her cards, coloring books and company to her hospital bed.
Makayla was born with Down syndrome.
Kay, Makayla's mother, said she didn't have a clue that her fifth child, her youngest, would be born with Down syndrome, but everything was going to be OK.
"We sat there, as a family, and we said, 'We will take care of this. She will be just like the other kids,'" Kay said.
Doctors diagnosed Makayla with acute myeloid leukemia just two short years later.
She lost her hair and spent much of her time in the hospital, her mother said.
Kay said other residents in the hospital entertained her toddler daughter by walking her up and down the hallways.
One year later, Makayla had completed chemotherapy and was cancer free.
"She never let anything stop her," Kay said.
Before she could talk, Makayla learned sign language to express when she wanted "more" to eat. She still signs today if someone doesn't understand her, Kay said.
"She had a hard time learning to talk so she signed what she wanted," Kay said. "She is always wanting to learn more."
Makayla had a "pretty normal" childhood, her mother said. She loved being around people, and even today, "she doesn't know a stranger," Kay said.
Her hospital visits became frequent again when the family learned that one of her kidneys was very small, just the size of a quarter.
At 11-years-old, Makayla had a kidney transplant and spent a year on dialysis.
She got to enjoy much of her teenage years without dramatic health scares, until about eight months ago, Kay said.
Makayla "did wonderful" when she got braces -- Kay said she thought her daughter might try to take them off -- but it was the sores that randomly developed in her mouth that had her parents worried, Kay said.
It took a visit to the family doctor, then a routine checkup with her kidney doctor, a 24-hour visit to the hospital and eventually a spinal tap and a bone marrow biopsy to try to figure out what caused the sores, Kay said.
Makayla's bone marrow biopsy came back abnormal.
She was diagnosed with post-transplant lymphoproliferative disorder, an out-of-control growth of lymph cells that is life-threatening, according to the American Cancer Society. It is linked to a malfunction of T-cells and the presence of Epstein-Barr virus.
Doctors are still watching a myeloid that might be a factor in confining Makayla to her Cincinnati Children's Hospital bed since Nov. 8.
Makayla first stayed at Charleston Area Medical Center's Women and Children's Hospital beginning Oct. 18 but moved to Cincinnati Children's as a "better bet to prolong her life," her mother said.
CHARLESTON, W.Va. -- Makayla Clark has many people cheering for her.
Her fans wear T-shirts with her name splashed across the front.
Her Facebook page, "Cheering for Makayla," has more than 5,000 "likes" from some strangers, many friends and all of her family.
They used to support her from the sidelines when the 17-year-old Marmet resident shouted her chants as a cheerleader at Horace Mann Middle School and then Capital High School.
But today, they show their support by bringing her cards, coloring books and company to her hospital bed.
Makayla was born with Down syndrome.
Kay, Makayla's mother, said she didn't have a clue that her fifth child, her youngest, would be born with Down syndrome, but everything was going to be OK.
"We sat there, as a family, and we said, 'We will take care of this. She will be just like the other kids,'" Kay said.
Doctors diagnosed Makayla with acute myeloid leukemia just two short years later.
She lost her hair and spent much of her time in the hospital, her mother said.
Kay said other residents in the hospital entertained her toddler daughter by walking her up and down the hallways.
One year later, Makayla had completed chemotherapy and was cancer free.
"She never let anything stop her," Kay said.
Before she could talk, Makayla learned sign language to express when she wanted "more" to eat. She still signs today if someone doesn't understand her, Kay said.
"She had a hard time learning to talk so she signed what she wanted," Kay said. "She is always wanting to learn more."
Makayla had a "pretty normal" childhood, her mother said. She loved being around people, and even today, "she doesn't know a stranger," Kay said.
Her hospital visits became frequent again when the family learned that one of her kidneys was very small, just the size of a quarter.
At 11-years-old, Makayla had a kidney transplant and spent a year on dialysis.
She got to enjoy much of her teenage years without dramatic health scares, until about eight months ago, Kay said.
Makayla "did wonderful" when she got braces -- Kay said she thought her daughter might try to take them off -- but it was the sores that randomly developed in her mouth that had her parents worried, Kay said.
It took a visit to the family doctor, then a routine checkup with her kidney doctor, a 24-hour visit to the hospital and eventually a spinal tap and a bone marrow biopsy to try to figure out what caused the sores, Kay said.
Makayla's bone marrow biopsy came back abnormal.
She was diagnosed with post-transplant lymphoproliferative disorder, an out-of-control growth of lymph cells that is life-threatening, according to the American Cancer Society. It is linked to a malfunction of T-cells and the presence of Epstein-Barr virus.
Doctors are still watching a myeloid that might be a factor in confining Makayla to her Cincinnati Children's Hospital bed since Nov. 8.
Makayla first stayed at Charleston Area Medical Center's Women and Children's Hospital beginning Oct. 18 but moved to Cincinnati Children's as a "better bet to prolong her life," her mother said.
The move has been admittedly stressful on the family, Kay said.
Makayla's mom, an employee at CAMC, has used all of her paid time-off and vacation days. She is relying on the Family and Medical Leave Act to be able to stay with her daughter in a hospital room three hours from home.
Kay said she and her husband slept on a couch in their daughter's room nightly until they decided an air mattress was a more comfortable, conceivable option.
Since Dec. 4, though, Kay has slept in Makayla's hospital room without Jim.
Jim Clark, 63, collapsed in his daughter's hospital room bathroom.
"They pulled her bed out of the room and took her away so she didn't see anything. She told my mom, 'It's OK. Go with dad," said Brittany Clark, 23, Jim's daughter and Makayla's sister.
Brittany said her father had a heart transplant in 2004 and he "got so used to heart attacks," she said. He even had a heart attack during a West Virginia University-Virginia Tech game years ago and it didn't faze him, she said.
She said the family still isn't sure what caused her father's death.
Makayla misses her father.
"They were really, really close," Brittany said of her father and sister. "They watched every Mountaineers football and basketball game together."
In October, Makayla and Jim got to speak to WVU men's basketball coach Bob Huggins when he called her hospital room to comfort her.
The South Huntington Animal Hospital gave Makayla a blue and gold WVU basketball signed by Huggins last month.
Jim Clark was by Makayla's side every day before he died and Brittany said he was the perfect dad as her sister was growing up, too.
"Every single morning, he knew he had to make her bacon and eggs. He took her to the bus stop every morning and picked her up every day," Brittany said. "He took her to therapy, cooked her dinner, and they were just big WVU fans."
Now Makayla's mom gets her ready for bed every night. Kay changes her daughter's sheets twice throughout each night because Makayla sweats so much from her medications, Brittany said.
Kay said the family has been "overwhelmed" by the number of people cheering for Makayla.
Every Wednesday in December, the Bob Evans in South Charleston has donated 15 percent of its sales to Makayla from when customers present a flyer at the register.
Todd Allen Branham, manager at the Pita Pit in Kanawha City, said his restaurant wanted to help out because, "Makayla has been so resilient." On Dec. 20, the Pita Pit donated 100 percent of its profits that day -- $800, Branham said -- to Makayla. Branham said he and the store's owner are adding their own contributions so they can give her $1,000.
The money will go toward travel expenses, bills, a fund for Makayla's mom so she is able to continue paying for health insurance, and, of course, Makayla's medical bills.
"We never would have dreamed we'd have this many people in the world who care about our little girl so much," Kay said. "We have been overwhelmed with all the people who have been cheering for us, sending messages and all the love out there. It's unreal how many people care about us."
Makayla got to travel the country roads back to her Marmet home for Christmas. She is now back in Cincinnati.
Brittany said she hopes people continue to pray for her sister, who is obsessed with Justin Bieber, Rascal Flatts, Nickelodeon -- especially Spongebob, Legos, singing and dancing.
To stay up-to-date with Makayla's condition, visit her Facebook page, "Cheering for Makayla," at http://www.facebook.com/CheeringForMakayla?frefts. The address to send Makayla something is Makayla Clark, c/o Amanda Middleton, 927 Seibel Lane, Cincinnati, OH 45238
Reach Megan Workman at megan.work...@wvgazette.com or 304-348-5113.
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