On a beautiful Sunday afternoon I found myself driving through Chileno Valley with Rebecca Porrata in the passenger seat. The valley, recently anointed with precious rain, was a brilliant and stunning fluorescent green. We were reflecting on our blessings, and Rebecca was remembering the many years she had worked in this valley as a public health nurse for the County of Marin.
Rebecca was taking me to meet a family who has been visited with a double tragedy: two of their children have been diagnosed with muscular dystrophy, a muscular wasting disease made known many years ago by the Jerry Lewis telethons.
Ernesto Orozco, Sr. works for the Shoreline Unified School District. He does landscaping and maintenance at all five schools. He transformed the grounds at the Bodega Bay School, according to Carolyn Connors, a certificated employee at Bodega Bay Elementary.
Muscular dystrophies are rather rare genetic disorders that cause weakness and muscle wasting, mostly in males, as it is located on the“y” chromosome. It results from a mutation in the gene that produces a protein called dystrophin, necessary for healthy muscle cells. Without it, muscle cells, including those of the heart and lungs, are easily damaged and weaken over time.
Sometimes when you walk into someone’s home for the first time, it just feels right. The warm, kind smiles of Ernesto Sr. and Maria Orozco belied the difficult financial struggles of their everyday lives, but reflected the love that keeps them going.
We are introduced to the children: Laura age 16, in the 10th grade and Ernesto Jr. age 14 and in the 9th grade at Tomales High School. Ernesto is in a wheelchair most of the time, but is able to walk a few steps. At school, an aide helps him with his daily activities. Another son, Alberto age 11, attends Tomales Middle school and is the second son in the family with muscular dystrophy. Claudia is ten, and in the 5th grade at Tomales Elementary School. Ricardo, age four, will attend kindergarten next fall in Tomales. He currently receives preschool outreach services from the Shoreline Acres Preschool. Ricardo keeps everyone laughing with his delightful, ebullient personality. Ricardo has been tested and, thankfully will not get MD.
Like many parents who suspect something is not right with their child, Ernesto and Maria saw doctor after doctor. Each one told them there was nothing wrong, and that he would be fine.
But a parent’s intuition rarely fails. “He didn’t crawl. He didn’t go after toys. I knew there was something wrong but all the doctors kept saying he’d catch up when he began to walk,” Maria said. Years passed and frustration grew. Finally, when Ernesto began school in Tomales, the school nurse, Lenora Kwork, saw immediately that the family needed help and she began steering Ernesto and Maria in the right direction, first to obtain a correct diagnosis and then for referrals and follow-ups.
At the Coastal Health Alliance Community Health Center Dr. Michael Witte recognized the need for further evaluation and referred the Orozcos to specialists. After observing Ernesto’s gait, the specialist ordered a biopsy, which confirmed his suspicions. DNA tests narrowed down the exact manifestations of this genetic disorder, declaring it to be a combination of two devastating forms of MD. And after Ernesto’s ordeal came the realization that their younger son, Alberto, also had the disease.
They received the news in two matter-of-fact letters outlining the diagnosis and the prognosis for each boy. The purely factual description was actually comforting after years of uncertainty.
Because of the need for a wheelchair-adapted vehicle, the family has had to purchase a van that can accommodate two wheelchairs and the entire family of seven. Ernesto’s family came forward to loan him over $13,000 for the van’s down payment. The Shriners donated the wiring and outfitting of the wheelchair lift. But still the $20,000 balance leaves an almost $400 monthly payment for the next seven years. They’ve been robbing Peter to pay Paul, trying to keep up. Despite their thrift and resourcefulness, the family finds this new payment a severe hardship.
“Sometimes, I lie awake at night and think about my family and our financial situation. It’s so scary I feel as if my head will explode,” Ernesto said.
SUBHEAD: Consider helping this family
Many people come to the end of the year realizing that they can make charitable donations in lieu of paying Uncle Sam The family will be most grateful for any donation.
Consider donating to the Orozco Family via West Marin Community Services. Stop by their office, 11431 State Route One, next door to KWMR to drop off your check, made out to “West Marin Community Services” and specify Family Emergency Fund. or send it to:
West Marin Community Services, P.O. Box 1093, Point Reyes Station, CA 94956.
All donations will go directly to the loan company to pay down the balance. You will receive a letter in the mail confirming your donation to a 501(c)3. And your heart will be gladdened with the warmth and love you’ve shared with a family who truly needs a little help.
Call 663-8361 for more information