Multiple communities have felt the impact of decades of service from the Allio family. When the news of Joseph Allio’s retirement was announced earlier this year, the team of people working around him celebrated his 30+ years of service with the Fairfield Police Department. While there were tears from many of the strong people in the room that day who had become family, Joe kept it together. That is until the Superintendent of Schools presented him with a check made out to BDSRA, it was then that the tears began to fall. Rather than write a proclamation about him, they decided to collect donations for a cause that they knew was important to him.
The way people showed up for Joe at his retirement is a reflection of how he treated them. He went to work every day with a goal of making the lives of his teammates better so they could have the foundation they needed to make the lives of everyone in the community better. This is a rare characteristic of a leader, a treasured one. And it’s just the tip of the iceberg when it comes to the remarkable qualities of the members of the Allio family and extended family.
Joe and his wife Kathy have six children, two of which were diagnosed with CLN3 Batten disease, Catie and Annie. Even though two of their children are affected with the disease, everyone in the household is impacted in a unique way and everyone pitches in. In talking with Kathy, she is filled with gratitude as she talks about her unaffected children stepping in to take care of their sisters over the years so mom and dad could take some much needed respite time. It’s clear that the leadership skills that Joe brought to the workplace are the same that he and Kathy instill at home and in their community.
The Allio’s have also brought this way of being to the BDSRA family. A genuine desire and action to make everyone’s life better, openly sharing stories about their kids and being advocates for the organization and mission for Batten disease families.
“We sure have sung BDSRA’s praises to everyone we know. It’s synonymous with our family. We share the importance, we share experiences of other families that are walking this difficult journey” said Kathy.
There was one particular experience that was a turning point for the family. Joe and Kathy shared that the years Annie was having rage seizures were extremely tough on every member of the family. Joe was considering building a rubber room in the house. Something had to change and yet, nothing was working. Then, a phone call out of the blue from Lance, the Executive Director of BDSRA at the time, shared the name of a drug that some of the other families had seen success with. So they headed to their doctor’s office. The drug wasn’t normally prescribed to treat this, but Joe and Kathy knew that if they stayed in the doctor’s office long enough, Annie would start breaking furniture and the doctor would change her mind quickly.
After going on the medication, Kathy shared that they have the Annie that they have today, one of the happiest people you’ll ever meet, because of that piece of information. I had the great fortune of meeting Annie at conference this year. She brought pure light, joy and love to every interaction. A very different behavior than before, Annie’s true personality is able to shine through now and every member of the family’s life is better because of it.
“I can’t imagine where we would be if that hadn’t happened.” said Kathy, “BDSRA was the hub and the families were the spokes, everything going in and out of the hub was so helpful.”
There are so many of you contributing to conversations online, in-person and over the phone. Thank you. The volume of phone calls in and out of the office continues to increase and the information you are sending to the BDSRA is truly changing people’s lives.
Getting involved and using their voices in the community is one of the ways the Allio’s have given back. Their efforts have strengthened our community immensely over the years. Joe served on the board of BDSRA and Kathy was active in grassroots fundraising in her local community for more than a decade.
Their voices have also inspired the Vacaville and Fairfield communities to support them as an advocate for Batten disease. A former colleague of Joe’s and a Police Sergeant at the time, Mark Schraer, organized a group of runners to fundraise for BDSRA. The 199 mile relay race down the California coastline began as Catie’s Cops, and would later come to be known as Catie & Annie’s Cops after their second diagnosis in the family. The event continues to thrive after 17 years.
Over the years, leadership naturally evolved and one of the volunteers that keep it going today is another former colleague of Joe’s, Fabe Periera. Fabe calls herself the Allio’s #1 fan and shared her sentiments about the family, “You look at them and think, there is hope, there can be a legacy like this.”
“The race is long and we’re exhausted but it doesn’t compare to anything Annie has to endure.” said Fabe.
This kind of generosity, awareness and passion for the cause has spread across the community. If you find yourself in Vacaville or Fairfield, you’ll encounter a large number of people who know about Batten disease and support the BDSRA in some way. This is directly attributed to the stories the Allio’s tell about their children and open door policy they have created.
“When Kathy has people over for a pasta dinner before the race, Annie greets everyone so joyfully. She loves her runners and I just love Annie, she has my heart.” said Fabe.
The relay isn’t the only fundraising support inspired by the Allio’s. Marlena Stell, Founder of Makeup Geek, has gone to great lengths to help create a legacy for Catie Allio.
“Marlena is an adopted niece and her parents we absolutely love. I don’t have any sisters, but today I can say that I have many sisters, Marlena’s mom became my sister years ago.” shares Kathy.
With a degree in Music Education, Marlena used to give Catie piano lessons.
“I just loved teaching her, she definitely played to the rhythm of her own beat!” said Marlena.
The two families spend time together every Christmas and are very close. With the devastating news of Catie’s passing, Marlena created an eyeshadow for Makeup Geek and named it Caitlin Rose. Not only did Marlena make sure that 100% of the proceeds go to BDSRA, she shed light on the disease and the struggle that Catie and other children with Batten disease endured. You can see the information here:
“It’s so humbling and I’m so grateful,” said Kathy, “she has had me come and speak to her employees to bring awareness to BDSRA which has been a great privilege and opportunity that goes back to the grassroots thing, one person hears it and shares it with another.”
In speaking with Joe, Kathy, Fabe and Marlena, two messages were abundantly clear; perspective and intention. They are always coming from a place of love and genuinely seeking to make the best out of every situation. This doesn’t mean that every day is easy.
“Sometimes when we’re talking it sounds like Disneyland because we are glass half full people,” Joe said, “There are a lot of times that it is discouraging and you have to make difficult choices about how you are going to spend your time.”
Throughout all of that, they love to share their journey and in doing so have created a legacy that is deeply appreciated.
“What our children have taught us you can’t learn from a book, you have to walk the difficult walk. You get the diagnosis and you feel like the world has been pulled out from beneath your feet and you are face down in the dirt. There is only one direction to go from there and that is up…it’s amazing what can become a mountain top, a flower, a smile from your ill child, to see their bravery and perseverance when it’s difficult to walk, when it’s difficult to speak. In caring for these two girls we’ve been able to serve people in a different capacity.” said Kathy.
I for one am grateful for this perspective. And I’m certain I’m not the only one. To the Allio’s and their extended family, thank you, your perseverance through unbelievable circumstances has inspired many.