Corina Clark, the 14-year-old daughter of Juanita and Glenn Clark, has myotonic dystrophy, a form of muscular dystrophy. Disney movies have always brought joy to Corina and her parents in their battle with this disease.
She loves Disney
"Corina loves Disney more than anything," Glenn said. "This was a dream come true. All she'll let us watch now are the DVDs from the trip, over and over. Before, Juanita would watch the Disney movies with her and she would start mimicking some of the things she saw. And since I hadn't really watched the movies, I started because it became such a thrill for us to see the things she was picking up on."
Corina is living proof that Christmas miracles aren't just for Christmastime. Doctors said Corina would never hold her head up, walk or hear. She proved them wrong. And her victories are made that much sweeter because of the difficult journey she and her family have traveled since the panic-stricken day Corina was born.
All precautions taken
Glenn and Juanita Clark had been married for 11 years when they were met with the most exciting news of their lives - they were going to be parents.
Juanita took every precaution throughout her pregnancy. She quit smoking, which she loved, and quit cutting the grass, which she loved even more. Juanita thought it was a bit odd that she could never feel her daughter kick or move while she was in her womb, as most pregnant women do, but an in-depth ultrasound put any worries of a miscarriage to rest.
On Nov. 28, 1995, the special day came for the ecstatic parents-to-be. The hospital waiting room was filled with family members, balloons and excitement. But the delivery room was filled with confusion and paranoia, as their baby girl was rushed out of the room as soon as Juanita gave birth.
"We just looked at each other, and excitement turned to fear," Juanita said. "I told Glenn to go with them, find them, do what it takes to find out what is happening to our baby."
Glenn eventually found the doctor in the hallway and demanded to know what was wrong with the baby girl they had named Corina.
"He told me her right lung had collapsed, her left was filled with fluid, and her heart stopped," Glenn said. "Well, mine did too. But I took a deep breath and said, 'OK, well, I have to tell my wife and family.' But walking away from him, I just could not imagine how I was going to do that."
Corina's heart was soon revived, but still, her parents were unable to see her. The nurse and doctor came into Juanita's room and told her the news, with tears streaming down the nurse's face. Glenn went into the waiting room, stunned, and faced the eager crowd of family members.
"I just told them that something was wrong," Glenn said. "My father couldn't take it. He had been so excited for us. He just left the room. But I remember going to sit with my mom on a bench, and it was raining outside and we just stared at this statue outside. She put her arms around me, and for a minute the sun peered through. My mom said, 'I have a peace, Glenn. She's going to be OK.' And the sun was gone. So I knew then that our Corina was going to be OK."
Hours later, the new parents were finally able to see their little girl. She was placed in a bed, with tubes and machines connected to her tiny body. Glenn and Juanita were told that Corina had no muscle tone, and that the doctor was going to run tests on her to verify what he thought may be a case of muscular dystrophy.
After a week in the hospital, Glenn and Juanita were able to take Corina home, along with the trials that were to come after her diagnosis of myotonic dystrophy.
"The doctor said she would never be able to walk, and probably would not be able to hear," Juanita said. "She was like our little rag doll, her muscles were just completely weak. And when we found out it was genetic, and that a long face and up-turned top lip were the facial features that come with the disease, we looked at her and Glenn looked at me and said, 'Oh no, Juanita. She has your face.' And I just knew then that I was the carrier."
Further tests on Juanita confirmed that she was, in fact, living with myotonic dystrophy, and that the small symptoms she has been feeling since she was 28 could be expected to worsen as she got older.
"I was so angry," Juanita said. "I'm still a little angry, that I did everything I was supposed to in my pregnancy and took every precaution, and still I put my child in jeopardy."
The new mother suffered postpartum depression, feeling as though she was the reason their baby girl was going to face a lifetime of physical and speech therapy.
"She didn't deserve this," Juanita said. "But then I thought, 'God could have taken her altogether.' And Glenn was so supportive, I made it through."
Corina's parents refused to give up on her. The doctors told them she would probably never be able to hold her head up, but Juanita would go to her crib every day and hold her, pushing Corina's head up with her hands to encourage the baby to keep her head up. Time after time, Corina's head would return to its limp position when her mother would release her hand. But one day, Juanita removed her hand and Corina looked back at her, holding her head in place on her own.
"Glenn ran and got the Polaroid camera and took a picture," Juanita said. "We were so excited. You wouldn't think seeing your baby hold her head up would be reason for so much excitement, but we were just beyond thrilled."
Small milestones continued to be reached, as Corina eventually passed her hearing test and walked on her own. But two months before her 12th birthday, on Sept. 28, 2007, Corina was wheeled into surgery to repair her spine's "S" shape, with it bending 70 degrees to the right at the top half and 60 degrees to the left on the bottom. Two parallel rods were fused into her back, running from her neck down to the bottom of her spine, and Corina faced five to seven days in the hospital.
But one week turned into five after she was unable to maintain a normal oxygen level. The little girl who doctors thought would never walk had to learn how to walk again, and she did, but a month after leaving the hospital, Corina's weak immune system left her with a severe case of pneumonia. She was rushed to Scottish Rite, where she would stay for two weeks.
"She had lost so much weight you could see her bones, and the nurses were having trouble finding a vein for the IV," Juanita said. "They had to put a feeding tube in her because she was having trouble keeping food down."
Glenn said he went through his own bout of depression, feeling unable to control a disease that was affecting his daughter and his wife simultaneously.
"I just put my faith in God, and seeing the charity groups that have helped us and the love that people show has inspired me to give back, so now I volunteer with different organizations and do what I can to help out," Glenn said. "Some of my co-workers at Delta have donated blood. Volunteers from the Make-A-Wish Foundation have done so much. With everything that is bad in the world, it really puts your faith back in people."
Doctors have told Juanita, who now has almost no grip in her hands and often feels tired, that she will probably only live to be 60 years old. But she and Glenn do not know what Corina's timeline is, and say they never want to know.
"She's already beat so much of what she wasn't supposed to, there's no point," Juanita said as Corina reenacts a swordfight from the Disney movie "Mulan" in the living room of their home, her parents smiling and clapping with encouragement.
Corina continues to be visited by Santa, and the Clarks said that any small gift she receives thrills her to no end.
"Christmas is all about her," Glenn said. "Seeing her light up is all we need. And it's the small things - stuffed animals, little figurines - she gets so thrilled by things ordinary kids would probably think nothing of. She's just so appreciative of everything, it makes you understand what a loving, sweet, fighter of a girl she is."
Juanita said her own disease is progressively getting worse, but her daughter's strength keeps her going, especially during the holiday season.
"Every day I see as another day I get to be with her. And I thank God that I can be with her. I do worry about my life span, and the thing that worries me the most is that God will take me before my job is done," Juanita said, unable to hold back tears. "But as long as she is happy, I can handle my difficulties. If she's happy, that's all that matters. And Christmas makes her so happy. We've been through so much, but now more than ever, we realize we have been so blessed."
Post a Comment
Follow us on Twitter!
