Local family thankful for community support in helping their son flourish
By Raiza Giorgi
Grant and Jenifer Sanregret tend to plan out their days so they are able to help their 8-year-old son Vance with his breathing treatments multiple times a day.
“People ask us, do we ever just to things spur of the moment, and not really because we never miss a breathing treatment for Vance. It’s just not optional,” Jenifer Sanregret said.
Since he was 3 weeks old, Vance has been diagnosed with cystic fibrosis (CF). This rare genetic disorder is not common, and only 70,000 people in the world have it, according to the Cystic Fibrosis Foundation.
This local family has been championing research for this ailment and will be participating in the Cystic Fibrosis Great Strides Walk at Chase Palm Park in Santa Barbara on Saturday, November 13.
“We won’t stop helping raise funds for a cure until the letters CF stand for ‘cure found,’” Jenifer said.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time, according to the CF Foundation.
“Social distancing and sanitary practices have been imparted on our household way before COVID ever came around,” Jenifer Sanregret said. “We have a mask hanging area in our front entry way that has been there forever.”
Jenifer also explained that people with CF cannot be around other people with CF as they can easily spread their germs to one another and become ill.
The Sanregret family is most known in the Santa Ynez Valley for their former business, Los Olivos Lemonade, the stand that is in the shape of a giant lemon. They sold their business several years ago to the Gods Country Provisions owners. Grant now works in cyber security and Jenifer is doing wedding and event planning.
“We came to the Valley to visit my in-laws when Vance was a toddler, and we immediately noticed a change in his breathing,” Jenifer said. “He had a nose whistle, which meant he could breathe through his nose which had never happened. I immediately said we were moving here.”
The family had previously lived in Austin, Texas, which has a hotter and more humid climate, not conducive to a child that suffers from an excess of mucus in his system.
In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky, the CF Foundation explains.
“Basically the mucus is the consistency of peanut butter and it clogs his breathing and can create a hotbed for germs and bacteria,” Jenifer said. “The weather here is more dry and being near the ocean influence helps a lot.”
When they moved from Austin, the Sanregrets were suddenly doing fewer breathing treatments per day, from 12 down to five. Vance takes 27 pills a day, once including an enzyme that is made for people with CF to help his pancreas release digestive enzymes to help absorb his food.
“Vance has two mutations of CF, one is the most common and the other is still part of the more than 1,700 mutations that have little research on, which is why we are active in raising money to hire doctors to find out as much as we can,” Jenifer said.
The average life expectancy for people with CF is 42, which is a tremendous advancement from the 1950s, when children were only expected to live to the age of 5, according to the CF Foundation.
“There have been great treatments developed, and Vance is now taking Trikafta, a new therapy just approved for his age range that should stop the progression of CF,” Jenifer said. “We have only been on it since July, but are noticing changes and hopefully one day Vance won’t have to do the breathing treatments.”
They wake up early every day to do two treatments before Vance attends Family School in Los Olivos. After school, he does three treatments and then can do other activities like sports, play music or go to Boy Scout meetings.
“We have such an incredible community here, especially at school,” Jenifer said. “The teachers even learned how to do his breathing treatments in case he needed to at school.”
Jenifer said Vance loves soccer and being outside, playing Army with his little brother Hayes.
“They have such a great bond and even though Hayes doesn’t have CF, he sits with Vance during treatments and keeps him company,” Jenifer said.
For anyone wanting to learn more about CF you can visit www.cff.org, and to sign up to participate in the Great Strides Walk later this month or to donate to “Vance’s Army,” visit https://fightcf.cff.org/site/TR?fr_id=8700&pg=entry.