The Pate family was out of options and out of time. Their 3 year-old daughter Lacey was born with King’s Syndrome (KDS) – a congenital myopathy associated with skeletal abnormalities which affect bone structure (spine) and facial features. At the time of her diagnosis, Lacey was the 3rd known American case.
KDS had caused spinal curvature so extreme that Lacey’s body was bent into a C-shape at an 84 degree angle, her body’s arc was slowly crushing her lungs and vital organs. Lacey Pate weighed only 18 lbs. Her mother was holding her when a tiny arm emerged from the horseshoe shape under a blanket, tiny fingers curling around her mother’s thumb. Lacey was dying.
The only surgery that could save Lacey was not FDA approved and there was only one specialist in the world who would even attempt it, Dr. Robert Campbell at the San Antonio Children’s hospital. Lacey’s fragile frame would be the doctor’s 2nd biggest concern. A common symptom of KDS is malignant hypothermia associated with anesthesia. Lacey is basically allergic to surgery. Her temperature skyrockets under anesthesia. Dr. Campbell knew this as he scrutinized Lacey’s X-rays. Given the high risk factors, the Pate family was prepped to expect a firm “No.” Dr. Campbell finally called with the verdict,
“If we do nothing this child will die. We go in two weeks.”
After a prolonged spinal correction surgery, Lacey drifted into a coma for 8 days. On the 9th day she woke up and vomited. But she was alive. Dr. Campbell’s surgery proved a success. He inserted a curved metal rod (VEPTR) into Lacey’s ribs which help both separate the ribs and straighten the spine. Lacey’s spine corrected from 84 degree curvature to 48 degrees. Most importantly, she was no longer suffocating.
On the dove tail of the first successful surgery was a new hurdle to overcome, Lacey wanted to walk. One year later the family went to see a specialist in Seattle. Her legs were still frozen at a 90-degree angle. This trip, her parents Tammy and Tim brought her to the hospital in a wagon rather than a wheelchair because Lacey wanted to feel like a normal kid.
The orthopedic surgeon took one look at Lacey and said he couldn’t do it, “She’s not strong enough for surgery.” The doctor’s spoke within earshot of Lacey. Lacey responded by grabbing the side of the wagon. The doctor watched in disbelief as she painfully hoisted herself up to her feet. Shaking she exclaimed, “I am strong enough. And I will walk!”
Have you ever seen an 8 year-old stand and immediately defy a doctor’s prognosis? To be a fly on that wall. Needless to say, the doctor changed his mind and the surgery to straighten and brace her legs was a success.
The years that followed would bring more surgeries – as Lacey grows, she must undergo many operations to help maintain her shape. She is confined to a wheelchair. The surgeries will continue until she stops growing. Lacey has orthodic braces on her hands, torso, and feet. Lacey has anthrogryposis, severe kyphoscoliois, severe hearing loss, webbing from the neck, hypoglycemia, club feet, vertical talus, and chronic respiratory insufficiency. Each operation presents a new and dangerous set of risks. Her parents hold her hand right up until it’s time to operate. But when you go, you go alone. Now 15, she’s endured 43 surgeries.
Lacey’s parents have sacrificed so much to make life comfortable for their daughter. Her mother Tammy quit her job to take care of Lacey full time. Because Lacey can go into respiratory or organ failure ‘coding’ at any time, she sleeps in the same room as Lacey every night, keeping constant vigil over her daughter, “When Lacey sleeps she gets so little oxygen.” Lacey’s father Tim also took a lesser position at his company so he could travel less and be with his daughter more. Now the sole provider for the family, they have struggled mightily making ends meet.
But last year a glimmer of hope appeared… only to be smothered.
There is evil in this world. There are those who seek out people in desperate need, promising money and hope to their families; then in the 11th hour, they disappear without a trace, dashing all hope. Lacey was a victim of one such sinister hoax. Somebody claiming to represent two NFL football players (I’ll omit their names) reached out to the Pate family last year. The man said the players would each donate $100,000 to cover her medical expenses, travel, rehabilitation costs for Lacey.
“I started crying. I was so relieved for my daughter.”
In the end it was all a fraud, the scheme of a sad, misguided individual.
During my research for this story, I’ve tried explaining that story to my friends, which is met with wholesale confusion and indignation as they try to to comprehend that such monsters exist at all. But there is evil in this world.
So understandably, the Pate family was initially hesitant when we told them they were the next Chive Charities recipient. The sum was large: $75,000 for a completely new bedroom, closet, and a brand new minivan. Lacey’s room is cramped and cluttered with medical equipment. The expansion will free up space for a new desk, bed, and facilitate mobility within the room. We also offered to buy them a brand new handicap accessible Honda Pilot, “Because of what happened, we didn’t believe it at all. We knew very little about theCHIVE personally but when we told our friends Chive Charities wanted to help us, their jaws dropped. “We were cautiously optimistic. But our previous experience had taught us that, until we actually had the minivan, none of it was real.”
They drove to the dealership where a kind young lady handed the family the keys. “We drove off THAT day with the minivan. It was amazing. It was real.”
This is Lacy’s Story…
Donate to Lacey RIGHT HERE!.
Learn all about Chive Charities and the Chive Fund RIGHT HERE.
UPDATE #1: $10,000!! In only 40 minutes!!
UPDATE #2: $20,000 in just over 1 hour!!
UPDATE #3: $30,000!!!
UPDATE #4: $40,000!!! Goal doubled and the Chivers aren’t done yet!
UPDATE #5: Holy cow $50,000!!!
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