Like sunshine breaking through clouds
By Ed Grisamore
Telegraph Staff Columnist
The first thing people notice about Brooke Hendley is her smile.
It's a smile that can light up a room like a halogen lamp. Throw in her blonde hair and blue eyes, and Brooke will have you wrapped around her little finger.
The smile is still with her these days, despite all the needles and nurses.
This little girl has stared at more hospital walls than most older folks. She struggles to lift her head from her pillow. She can't roll over in bed.
"Her body just isn't working with her any more," said her mother, Kathy.
The smile, though, lifts the corners of her face. It is like sunshine breaking through the clouds.
Six months ago, Brooke was a typical 4-year-old. She loved to laugh and play. Her best buddy is, and always will be, her twin brother, Blake.
Last summer, Brooke started complaining about her knee hurting. Her leg wouldn't bend. Her speech slowed.
Thus began a long trail of puzzled doctors. Brett and Kathy Hendley heard the echoes of each attempt at a diagnosis with stunned disbelief. Cerebral Palsy? Encephalitis?
Finally, three weeks before Christmas, results from a muscle biopsy revealed Brooke has a mitochondrial disorder called "Leigh's Disease."
The disorder is rare and most often fatal. Doctors can't be certain Brooke will live to see her fifth birthday on April 20.
That is why her name now appears on prayer lists at many Macon churches. That is why Brett and Kathy have taken her to Fort Lauderdale, Fla., where she is undergoing experimental treatments at the Ocean Hyperbaric Neurologic Center.
That is why the preschool classes at Stratford Academy have sent her cards and care packages. And that is why an account has been established in her name at SunTrust Bank to help the family with medical and travel expenses.
A Web site (www.caringbridge.org/ga/brooke) has been set up to provide updates on Brooke's progress, along with a guest book and photo album.
Brett Hendley once played baseball in the Oakland A's organization. His father, Bobby, was involved in the greatest pitching duel in baseball history. He pitched a one-hitter for the Chicago Cubs on Sept. 9, 1965, losing the game when Sandy Koufax of the Los Angeles Dodgers pitched a perfect game.
But Bobby Hendley would gladly give up every strikeout in his storied career if it meant his granddaughter would get well.
It has been months since Brooke has been able to talk. Her motor skills are gone. She is helpless, like a 38-pound infant. These past few days, however, she has showed encouraging signs of progress. Her parents call them "baby steps."
Blake is a caring and sensitive child. He goes to preschool and tells his friends how much he misses his twin sister.
Brooke has always sought her brother's comfort when she was hurting. When no one else could get her to eat, she often would let Blake feed her.
"They are very close," said Kathy. "Blake prays for his sister every night. He prays that one day they can run around and play together again."
Hi - I'm Kathy Hendley, Brooke's mom. For those of you who aren't familiar with Brooke's condition, I will give a brief history. Brooke was a typical four - year-old up until July 2003. She woke up one day and couldn't bend her left knee and had difficulty walking. We were sent to a Pediatric Orthopedic who told us he thought she had a mild case of Cerebral Palsy. Of course we were devastated. Two weeks later, we saw Dr. Frank Berenson, a Pediatric Neurologist, who reviewed her MRI and examined Brooke. He told us that she did not have CP and that CP might not be such a bad thing. He admitted her to the Scottish Rite Hospital in Atlanta. She underwent a spinal MRI, a spinal tap and numerous blood tests. We were told that our best case scenario would be Encephalomyelitis (inflammation of the brain), but that her MRI was very disturbing. It was symmetrical which usually indicates a metabolic condition rather than an inflammatory problem. However, we started on intravenous steroids, and she seemed to improve. We were in the hospital for 5 days. We were sent home on a two-week weaning schedule. Two days after coming off the steroids, Brooke regressed. We started on higher doses for a longer period of time. When she did not respond, she was hospitalized again. We went through three weeks of intense physical, occupational and speech therapy. After returning home, Brooke once again regressed. We were hospitalized again. This time the muscle biopsy was performed. Our worst fears were confirmed on December 4, 2003 - she did indeed have a Mitochondrial Disorder. We were sent home being told there was nothing else they could do for her. The very next day, we were hospitalized at the Medical Center of Central Georgia. She had a complete bowel obstruction from barium used during her barium swallow test done at Scottish Rite. That turned into a four day stay.
The Heart of Georgia Mothers of Multiples (MOMS) & Daystar Church are sponsoring a Benefit for
Brooke Hendley
(A 4 year old twin with a Mitochondrial Disorder - Leigh's Disease)
SATURDAY, MARCH 20, 2004
11: 00 A. M. - 1: 00 P. M.
BAR-B-Q PLATES - $6
Piedmont Sports Medicine & Orthopaedic Complex
4660 Riverside Park Blvd.
Macon, Georgia
Please log on to www.caringbridge.org/ga/brooke to read the updates regarding Brooke's condition & feel tree to pass this email address on to those that you know.
