Family battered by endless health crises

'I've never felt so low in my whole life'
Sep. 07, 2013 @ 08:18 AM

For the past 11 years, Crystal Brookshire's life has been one family medical crisis after another. After more than 100 surgeries between two of her three children, and with her own health issues on hold, she says she is nearing her breaking point. Still, she puts on a strong face as she tries to hold her family together, day by day.

"Crystal does not cry," Brookshire said.

Brookshire, 31, dreamed of raising a family. Lacey Potts, 11, Savanna Potts, 10, and Timothy Brookshire, 5, were a gift to the Callahan, Fla., native, who always longed for the normalcy of a family life. But family life for Brookshire and her husband, John, means a normal routine of feeding tubes, doctor's appointments and wondering what will be next.

"You can't get back yesterday, you can't live for tomorrow, you just live for today," she said.

Lacey was born 16 weeks prematurely. She suffers from Asperger's syndrome, autism, bipolar disorder and attention deficit hyperactive disorder. Yet she cries herself to sleep each night because she feels guilty for being the healthy one.

Savannah was born with a cleft lip and palate and a polycystic kidney. She lost the left kidney prior to birth. The Brookshires recently learned Savannah has a congenital heart defect. She has undergone 50 surgeries due to her medical issues.

Timothy is affectionately known as "The Tinman," after the "Wizard of Oz" character who desired a heart. Timothy was born with a rare heart defect known as Tetralogy of Fallot that limits blood flow to his lungs, and with a congenital malformation of the pulmonary valve in the heart -- the valve is closed, further obstructing the flow of blood from the heart to the lungs. At 6 months of age, Timothy had open heart surgery. Crystal Brookshire then learned Timothy's DNA contained defects in the 16th chromosome that ordinarily should have meant he could not survive. The roof of his mouth never formed completely during gestation, so all but four teeth were removed due to the threat of infection that could travel to his heart.

Timothy first tried to eat solid foods two years ago. Mostly, he is fed Pediasure, a nutrition shake for children, sometimes through a feeding tube. Open-heart surgery in 2008 left his vocal chords paralyzed, so while he can now speak, he is hard to understand. A stent holding his right nostril open must frequently be changed under anesthesia by a doctor. His doctors span the country, including a heart surgeon in Calfornia, a physician in Texas and one at Brenner Children's Hospital in Winston-Salem. He receives a daily regimen of baby aspirin, allergy medicines and Oxycodone for pain, and undergoes nebulizer breathing treatments every six hours.

But Timothy tries to live as normal a life as he can. He loves playing with his Xbox. He loves to ride sheep at the rodeo, play baseball, and even had signed up for football.

Timothy was to start kindergarten last week. Now, he is again fighting for his life. Last month Crystal started to bathe Timothy he screamed as she washed his face. His pediatrician scheduled a CT scan and MRI and found he was suffering from Langerhans cell histiocytosis, a disorder in which excess immune system cells build up and cause bone or skin lesions and possibly multi-system disease due to abnormal cell growth.

"Can you fix my baby?" she implored the doctor.

But new lesions began popping up on other areas of his body. She remembered the knot on his chest she had felt a few months back and now realizes what it was. Doctors soon will decide whether to remove the frontal lobe of his brain, a procedure that would be his 55th surgery, or undergo a year-long round of chemotherapy.

Crystal, a dimunutive 5 feet tall and 104 pounds, has had to put her own medical issues on hold. She has been treated for cervical, uterine and ovarian cancer, and had a hysterectomy in March 2012. She also suffers from Graves' disease -- an immune system disorder that results in the overproduction of thyroid hormones -- and narcolepsy, a chronic sleep disorder. She has rheumatoid arthritis, nerve system disorders in her arms and legs, and a hip dysplasia, an abnormal formation of the hip socket in both legs that will require hip replacement surgery.

"I've had that surgery on hold for 11 years," she said.

John Brookshire, a former Marine, now is a specialist with the Army National Guard's 1451st Transportation Unit in Morganton, and frequently is away from home, but Crystal Brookshire is grateful for his income and health care insurance.

"It's hard knowing she's doing it by herself," John Brookshire said. "She understands (her sacrifice) is more than I do. I have to work to take care of their insurance. I'm doing the daddy and husband jobs."

Crystal Brookshire travels an average of 20 days a month to Brenner in Winston-Salem for Timothy's surgeries and treatments, often staying at the Ronald McDonald House.

Her father, Frank O'Berry, came up from Florida to help. Just when things seem hopeless, family members or the girls from her cheerleading team she coaches are always there for assistance, or simply a comforting hug.

"Even though in the moments I felt so alone I really wasn't," she said.

Still, with Timothy's fate in the hands of doctors halfway across the country, the fear of the unknown leaves her waiting, wondering and worrying.

"If the Good Lord says he's ready to take Timothy, I think we can live with it," she said. "Timothy has touched so many lives in his short years here.

"I believe God gives us just what we can handle," she said. "Now, He thinks I'm Superwoman. But the cape's coming off. I've never felt so low in my whole life.

"This is going to be a long journey. I can't stand to see my babies hurt. I know together we will get through this, one day at a time."

 

Want to help?

A benefit BBQ/Bake Sale for Timothy "The Tinman" Brookshire will be held today from 2-6 p.m. in the parking lot of the Food Lion located at 847 Wilkesboro Blvd. in Lenoir. Timothy's story can be found on Facebook by typing Miracle of Timothy The Tinman.