Vance’s army will march for a cure for cystic fibrosis
A local family grateful for the community’s support to help their son thrive
By Raiza Giorgi
Grant and Jenifer Sanregret tend to plan their days so that they can help their 8-year-old son Vance with his respiratory treatments several times a day.
âPeople ask us if we’re ever just on the spur of the moment, and not really because we never miss respiratory therapy for Vance. It’s just not optional, âJenifer Sanregret said.
Since the age of 3 weeks, Vance has been diagnosed with cystic fibrosis (CF). This rare genetic disease is not common, and only 70,000 people worldwide have it, according to the Cystic Fibrosis Foundation.
This local family has championed research into this disease and will be participating in the Cystic Fibrosis Strides Walk at Chase Palm Park in Santa Barbara on Saturday, November 13.
âWe won’t stop helping to raise money for a cure until the letters CF stand for ‘cure found’,â 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.
âSocial distancing and health practices were transmitted to our home even before COVID appeared,â Jenifer Sanregret said. âWe have a mask hanging area in our main entrance which has been around forever. “
Jenifer also explained that people with cystic fibrosis cannot be around other people with cystic fibrosis because they can easily spread their germs to each other and get sick.
The Sanregret family is best known in the Santa Ynez Valley for their old business, Los Olivos Lemonade, the giant lemon-shaped stand. They sold their business several years ago to the owners of Gods Country Provisions. Grant now works in cybersecurity and Jenifer takes care of wedding and event planning.
âWe came to the valley to visit my in-laws when Vance was a toddler, and we immediately noticed a change in his breathing,â Jenifer said. âHe had a nasal whistle, which meant he could breathe through his nose, which had never happened. I said straight away that we were going to move here.
The family had previously lived in Austin, Texas, which has a warmer, more humid climate that is not conducive to a child with excess mucus in their system.
In people with cystic fibrosis, mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene causes CFTR protein become dysfunctional. When protein isn’t working properly, it is 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, explains the CF Foundation.
âBasically the mucus is the consistency of peanut butter and it obstructs your breathing and can create a hotbed for germs and bacteria,â Jenifer said. “The weather here is drier and being near the influence of the ocean helps a lot.”
When they moved from Austin, the Sanregrets were suddenly doing fewer respiratory treatments per day, from 12 to five. Vance takes 27 pills a day, one of which is an enzyme designed for people with cystic fibrosis to help his pancreas release digestive enzymes to help absorb his food.
“Vance has two CF mutations, one is the most common and the other is still one of more than 1,700 mutations that little research has been done, which is why we are active in fundraising. to hire doctors to find out as much as we can, âJenifer said.
The average life expectancy of people with cystic fibrosis is 42 years, which is a huge improvement over the 1950s, when children were only expected to live to age 5, according to the CF Foundation.
âThere have been some great treatments developed, and Vance is now taking Trikafta, a new therapy has just been approved for her age group that should stop the progression of cystic fibrosis, âJenifer said. “We’ve only been there since July, but we’re noticing changes and hopefully one day Vance doesn’t have to do the respiratory treatments anymore.”
They get up early every day for two treatments before Vance goes to the family school in Los Olivos. After school, he has three treatments and can then do other activities such as sports, playing music or attending Boy Scout meetings.
âWe have such an amazing community here, especially at school,â Jenifer said. âThe teachers even learned to do his respiratory treatments in case he needed it at school. ”
Jenifer said Vance enjoys soccer and being outdoors, playing Army with his little brother Hayes.
âThey have such a great bond and although Hayes does not have CF he sits with Vance during the treatments and keeps him company,â Jenifer said.
For anyone interested in learning more about cystic fibrosis, you can visit www.cff.org, and to register 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.