If you can’t — even for a moment — wrap your mind around what it means to believe in God with all your heart then it may be impossible to understand how the Cabral family survives.
In the last decade, Mom and Dad have seen three of their sons die from a newly discovered genetic disease that causes both cerebral palsy and muscular dystrophy.
Simon, their most recent child to slip away, died just two weeks before Christmas. He was 16 years old and weighed 40 pounds.
He also had the most wonderful smile.
Yet this is not a family in despair. This is a family that devoutly adheres to what they call the celebration of all of God’s children.
To be sure, they have shed more tears than most families ever will. Still, there are no regrets about every child born and every child raised.
Time on Earth is fleeting, according to the Cabral’s Roman Catholic beliefs. What follows lasts for eternity.
When I arrive at the Cabral home in Irvine, it is one day after Easter and white roses grow near the entrance. The sun shines.
But the brightest thing around is the warm dance in Laura Cabral’s eyes as she welcomes a stranger into her family’s home. Time and again, she offers a specially made array of red strawberries, fresh melon and doughnuts with sprinkles that look like the Fourth of July.
Two of the couple’s four daughters — Gianna is 13, Karina is 10 — giggle and fire off a series of comments and questions before they head off to handle home-school homework.
All four girls (a third is in college and the eldest is raising her own family) are as healthy as Joshua, their 21-year-old son. Christopher, now 26 years old, however, is challenged.
He can only take nourishment through a tube that goes directly into his stomach and cannot walk or talk.
Sill, Christopher knows what’s up, grins at me from his wheelchair and says, “wa-wa,” for water.
There’s good reason for that.
His brother Simon made it his mission to help people in Ugandan villages get access to sustainable clean water and on Sunday, April 28, the Cabral family will walk, run and roll through Mile Square Park in Fountain Valley to raise funds for the nonprofit Wells for Life, in Simon’s honor.
Sure, there once were nine children and now there are six. But that number is only of the flesh and, besides, Christopher plans to rocket the race in his wheelchair.
As he silently smiles about his plan, Christopher’s mother hands me three pins Simon’s Portola High School friends made to honor Simon’s Wells for Life effort.
The first reads, “Be the inspiration.”
Breaking genetic ground
Although few know it, the Cabral family is famous in the rarified and complex field of human genetic mutations.
But let’s back up before getting into the science.
Laura and Rick grew up in the South Bay and met when they were 16 years old at a Catholic retreat.
They happened to be across from one another on the bus to Big Bear and started chatting. In the mountains, they sat on a log and talked for hours until stars sparkled.
“We became really close friends,” Laura recalls. And that was all. For awhile.
Laura went off to college in Richmond, Va. Rick was swamped with classes at Harvey Mudd College in Claremont. But, finally, Laura invited Rick over for Thanksgiving dinner at her parents’ home.
In 1988, the couple married. He was 24 and she was 23. A year later, their eldest was born, Alena.
Today, Laura is a home-school teacher, Rick is associate director for I.T. services at CalOptima in Orange and Alena, now 29, lives with her husband in Orange County where the couple raises their four healthy children, ages 15 months to 8 years old.
But life was very different for the Cabrals’ first son, Michael. He was slammed with neurological and muscular disorders soon after he was born and died a decade ago at age 18.
Four years later and suffering from the same disabilities, Michael’s brother Daniel died, also at age 18.
A few years before Michael died, a UCLA neurology professor by the name of Dr. Joanna Jen heard about the family’s challenges and began investigating what was going on.
Calling the disorder “particularly cruel,” the UCLA report states the babies “suffered from poor muscle tone, difficulty feeding, growth retardation and global developmental delay.”
With critical help from the Cabrals, the scientist and her colleagues worked for five years before they were able to pinpoint the disease-causing mutations.
In explaining the breakthrough for what is known as “PCH Type 1 with SMA,” a UCLA report notes the diagnosis “is often delayed or never made because the combination of cerebellar and spinal motor-neuron degeneration is very rare and not commonly recognized.”
But now scientists can work toward developing possible treatments and assist similar families around the world.
“We are grateful for the generosity of the (Cabrals) in sharing their experience and participating in research,” Jen says, “to improve the lives of other children who are similarly affected.”
For the Cabrals, however, life is more about faith.
Consider the second pin made by Simon’s school friends: “Made to be courageous.”
Clean water wells
A few years ago, the Cabrals heard about the Mission Viejo-based Wells of Life and Simon took to it like, well, a kid to water.
He joined the Clean Water Club at Portola High, raised money for Wells for Life and took part in its annual fundraising event, Run4Water. Beaming with delight, Simon also beat Dad to the finish line after a little help souping up his wheelchair.
Of course, Wells of Life — like this Sunday’s event — is about more than racing.
“Not only did we get to have fun,” Rick told the gathering during Simon’s funeral Mass at St. Thomas More Catholic Church in Irvine, “we were able to help provide clean water to an entire village.”
Nick Jordan is founder and CEO of Wells of Life, now wrapping up its first decade.
After launching four schools in Uganda, Jordan created his new organization to educate thousands in that nation about the need for hygiene and, most significantly, build as many water wells as possible.
Currently there are 405 wells and more in the pipeline.
There’s a water crisis in Africa, Jordan points out, and there are some 20 million people in Uganda alone — nearly half the population — with little access to clean water.
Jordan tells me each well costs $6,000 to build and maintain and serves as many as 1,000 people.
“Water is the first step,” he explains, “but not the only step.” Nearby drinkable water creates time for mothers to start micro-businesses and allows children to go to school rather than fetch water.
Clean water, Jordan maintains, “should be a basic human right.”
Heaven and Earth
If you are like me, your mind swirls when talking with people like Laura and Rick Cabral.
While the specifics of PCH Type 1 were unknown when they started their family, nine children is a lot to handle and it must have been clear early on that something was genetically amiss.
Rick nods and Laura gently agrees. But the couple also is very clear about the family’s path.
“The greatest gift of all is the gift of the soul,” Mom allows. “It is a partnership with you, your husband and God.”
“Clearly there are challenges,” Laura admits. “Rejoicing doesn’t mean I don’t have tears.
“I’ve sat there and watched a child’s chest go up and down. I’ve prayed to God to please let a child live.”
As the morning continues, Laura smiles at Christopher and Christopher smiles back. Rick points out that Simon’s life may have been different than most, but that he loved life, Seaworld, movies and music.
He adds Simon saw the Grand Canyon, visited Lourdes in France, played baseball in the Little League Challenger Division, and was an active member of the neighborhood swim team, paddling on his back with the help of a vest and a companion, often his oldest sister.
Then there was Simon’s clean well water mission.
All children, regardless of age or earthly or heavenly locale, Laura states, have a mission and a purpose. Compared to eternity, she offers, “our life on Earth is gone in the blink of an eye.”
Mom points out, for example, that during Simon’s time in the earthly world, “He brought joy and people of all abilities together.”
At Simon’s funeral a few months ago, the Portola High School band played an instrumental version of “Mr. Tambourine Man” in honor of Simon who played tambourine.
The final pin they made to help raise funds for Wells of Life states, “Make every note count.”
Laura says the pins concluded with “remembering Simon” and were both literal and figurative. “A kid like Simon who couldn’t communicate like we do,” Mom reports, “found a way to communicate on some level.”
Then Laura offers a statement that either you believe or you don’t. Many call it the mystery of faith.
“There are no wheelchairs,” she says, “in heaven.”