An Extraordinary Child Is Born
When Denise Garcia was born weighing 6-1/2 pounds and nineteen inches long in 2008, her mom, Nereyda, was thrilled to welcome her beautiful little girl into the world. Denise was her third child and early on, Nereyda could tell that something was not right. She kept telling the doctor; worried, that Denise couldn’t sit up and wasn’t developing on schedule. The doctor kept reassuring her that everything was normal.
At the nine month check-up, things changed. The doctor was manipulating Denise’s leg when they heard a crack: the hip joint was dislocated. Denise didn’t even scream. The doctor maneuvered the joint back in place and referred her to an orthopedic specialist at Shriners Hospital. Denise was put in a full body cast for four months and began physical therapy immediately upon its removal.
A Family Made Up of Professionals
In February of 2009, just after her first birthday, Denise started at Physical Therapy Care & Aquatic Rehab of Fort Bend, a clinic close to home with a great reputation. As Nereyda points out, people come from all over to get help at this clinic.
“When working with kids, the first few months are spent acclimatizing the child to the clinic and people, building that trust relationship,” explained Patti Kocich, President of the clinic and Denise’s therapist as she watched Denise wander around, visiting everyone with her signature big smile on her face.
Cynthia Hicks fell in love with Denise and became her primary therapist. “When she first came here, she was so weak. She would fall over when she sat and she was not walking at all,” recalled Cynthia softly. “There was developmental delay and hip dysplasia which meant that her hip bone was not sitting correctly in the joint and the muscles were not supporting the hip joint.”
Cynthia focused on strengthening her core and her hip and teaching her overall transfers, how to get up and sit down as well as protective responses in case of a fall. Denise was a hard worker and started walking at the age of two with the aid of a walker. Still, Cynthia suspected that Denise’s problems were not solely orthopedic. After consulting with the therapists at the clinic and doing some research, they suggested to Nereyda that she get genetic testing for neurological disorders. The diagnosis came back last year: Denise has Charcot Marie Tooth disease (CMT).
“CMT is a peripheral nerve disease similar to Muscular Dystrophy but is not as debilitating a disease,” explained Cynthia. “Her diagnosis means that she has a quality of life and that she can grow up to be a beautiful young lady, go to school and have a career.”
Denise has been diagnosed with sleep apnea and also has gastrointestinal issues that make it difficult for her to gain weight. At five years old, she weighs 21 pounds.
At her regular checkup with the specialist in the Medical Center, the doctor told Nereyda that he was looking for better results because her hip was not being stabilized enough. He warned her that if there was no improvement, they would have to do surgery to put implants to stabilize the joint which would have to be replaced annually as she grew.
Upon hearing this, Cynthia redoubled her efforts focusing solely on the hip and using every tool and therapy that she could think of to strengthen the joint. The regimen changed to one day of aquatic therapy and one day on land, leg kicking, squatting and weights. “I did everything I could think of to work that hip joint,” she recalled.
But in February, 2013, the doctor said that she would need the surgery. “I was disappointed but didn’t show it,” said Cynthia. “We changed her physical therapy schedule and program to focus on the post-operative care.”
Nereyda takes over the story here through an interpreter and tells of the lead-up to the surgery. They went to the hospital for the pre-op tests which included x-rays. They were told to come back the next day at 6:30 am.
Before surgery, they drew a four inch line on Denise, from the middle of her thigh to above her waist to show the location of the incision. She was hooked up to the IV and had been given something to relax her. The doctor came in and briefed them that the surgery would take two and a half hours and they would use a spinal anesthetic. Then they took Denise to the Operating Room.
After a short time, the doctor came back out to the family and apologized. They had looked at the tests and the hip was in the right place. They were so sorry for making them come. Denise no longer needed
surgery and they should return in a year.
When they brought Denise back out to her family, she began singing. At this point and under her mother’s prompting, Denise softly sang the words of her song:
Yo soy Tu niña
La niña de Tus ojos
Porque me amaste a mi
I am Your apple
The apple of Your eyes
Because You loved me
Nereyda continued, “Denise has a God given gift. She wakes up every morning and sings, ‘I have a friend whose name is Jesus.'” Laughing and rolling her eyes she adds that she is also the first one up every morning at 6 am.
But the story of this little girl’s faith does not end here. The gastroenterologist was also concerned that Denise was not gaining enough weight. At the last check-up Nereyda was warned that if Denise did not gain a half pound in the next week, she would have to be hooked up to a feeding tube.
Understanding exactly what that meant, Denise decided that she wanted to eat through her mouth. Nereyda was despondent and prayed “Oh my God, if I can’t get her to gain even a half a pound in six months, how will I do it in a week?”
Nereyda did everything she could think of, feeding Denise every high calorie food all day. The following week, Denise went back to the doctor and had gained two pounds. No feeding tube!
A Walk of Faith
“I know that Denise is in God’s hands. I want to see my child walk and she wants to jump and shout in church but everything is in God’s time,” said Nereyda. “I am so grateful to all the therapists for the good work that they do: Cynthia, as well as April, her occupational therapist and Tiffany and Amy her speech therapists. Denise is with her family when she comes here and I have seen so much improvement, particularly since she began aquatic therapy.
With tears in her eyes, Cynthia said “Denise just makes me appreciate my job so much. She’s my kid but they are all my kids. I want to see her grow up and attain the quality of life that she wants and that she believes that God will give her.”
“When I work with kids, they are the ones that encourage me.”