When people think of heroes, they may think of men in uniform or super-humans in capes on TV. However, the distinction of being considered a hero isn’t limited to members of our armed forces or those in law enforcement and the fire department. In our small community, there is a hero amongst us who doesn’t wear a uniform, and whose cape is invisible.
Val Marietti, a Price native, has been advocating for mothers and families of critically or terminally ill children for 15 years, and has also been fighting for her son Jace and his battle with a rare disorder known as Cockayne Syndrome. It is such a rare condition that Jace is only one of a few hundred in the world who suffer from it. Cockayne syndrome is a neurodegenerative disorder that is characterized by growth failure and impaired development of the nervous system.
Marietti shared how challenging things were at first, and how hard the experience was with seeking out the proper treatment and resources.
Jace was diagnosed with his disorder at the age of three. At first, the doctors had a hard time with diagnosing what was ailing him. When they finally suspected that Jace had cockayne, the process of testing and treatment hit a brick wall almost immediately. The local doctors had very little experience with the disease, and the only person doing testing for it lived in Maryland and had died. There were no other places in the U.S. that were privy to the disease, so Marietti had to explore other avenues to find a solution. After searching on the internet and asking around, Marietti learned that there was somewhere in England where testing was available. “Thank God for the internet, because that’s how I find a lot of things,” she said.
Bills pile up
From there, Jace underwent a great deal of treatment and the bills began piling up. His skin biopsy alone cost $5,000, and it wasn’t covered by Marietti’s insurance. So as the doctor visits became more frequent and the debt increased, she found herself overwhelmed and consumed by the whole dilemma. “I was constantly in a panic,” she said. To put her mind at ease and rest a little easier, Marietti found a way to tackle the pile of bills. Whenever a bill came in the mail, she would put each of them in a tote and tuck it away. When payday would come around, she would go to the tote, reach in for a single bill, and pay for them one-by-one.
Despite the new system of paying off her debt one step at a time, there was still a constant influx of bills and costs that Marietti had to find a way of paying. So she turned to the neighborhood and began fundraising for her son. “We live in a really awesome community because I raised about $2,200 from a bake sale. People would come buy two cookies and hand you a fifty dollar bill…very emotional,” she said.
After only six months, the fundraising brought in nearly $20,000 and had deeply touched Marietti and her family. As time went on, Jace became somewhat of a local celebrity and has seen great support from the community. “Everybody loves Jace,” Marietti said. “Jace was honorary deputy a few years ago. They had 49 cop cars here from all over the state. Hundreds and hundreds of police, in uniform,” she said.
An advocate for single mothers
Along with fundraising and caring for Jace, Marietti began advocating for single mothers and families who were in the same or similar situation that she is in. She has run 20 fundraisers over 14 years, and through such events as bake sales, carnivals, butterfly walks and other activities, she has been able to raise money for families and create a support network. Many of the people that she came across were initially unknown to Marietti. But through word of mouth, acquaintances through the handicap school that Jace attended and the close-knit small town atmosphere, she was able to help out with a lot of local families in Price and around the neighboring counties.
Marietti offered advice and insight for parents who have recently discovered that their child was critically or terminally ill. “I was quite timid the first few times we went in for an IEP (Individualized Education Program) meeting; I’m not timid anymore. I am mouthy, and loud and scream until I get what I want, especially with insurance copies.”
“If you are willing to fight for it and scream, a lot of times they just give in.” There were numerous times when Marietti had to hound her husband’s insurance provider, just so they could get sufficient treatment for Jace. When their insurance wouldn’t cover Jace’s physical therapy, Marietti contacted the benefits coordinator every Friday for 17 weeks. Finally, after 10 weeks of writing, the insurance company finally agreed to cover physical therapy for four weeks. “I said OK, well expect another letter in seven days. Four weeks of my son’s forever syndrome doesn’t help. Eventually they just said, ‘we’ll pay for it, just stop bugging us,’” she said.
Marietti also suggested that parents reach out to their community to find out about places that will help out and resources that are available to them. “Ask for a social worker, ask for a child life specialist. You need to say, ‘Who can help me?’ If it’s something life-threatening, definitely ask for a social worker. Maybe they don’t even know, but they can normally hook you up with somebody that can get you down the right road. There are a lot of resources out there that people don’t know about, just because it’s never been offered to them,” Marietti said.
Working with Castle Valley Center
Most recently, she has continued to help with fundraising and works closely with the Castle Valley Center. Through the “Family-to-family” group that is run by the center, parents can participate in an equipment exchange. This allows families to get things like wheelchairs second-hand, which they’d otherwise be unable to get. Marietti explained that most insurance companies only provide one piece of equipment every five years. The exchange program remedies this by helping people get the equipment needed that they’d have to wait for.
Unfortunately, Marietti had to put Jace on hospice this past October, so her fundraising efforts have been put on the back burner. This hasn’t stopped her from reaching out, as she has created a scholarship in Jace’s name to help handicapped adults take college classes. The Jace Marietti Scholarship Fund allows these individuals to take gen-ed classes like art or music. “They don’t need the credit, but they would like to take it,” Marietti said. She also said that she’d like to open the scholarship up to the siblings of terminally ill children. She understands that in a situation with the parents having to pool all of their time and resources into one child, the siblings, “went without, and they’ve had to deal without one [or both] of their parents being home.”
Anyone who is interested in learning more about fundraising events or other information regarding any of the aforementioned groups or resources can go to the “Team Jace” page on Facebook to get regular updates on events. Marietti has also urged people to befriend her on Facebook as well, where they can contact her directly and find out about events like the Butterfly Walk that will take place this summer.
While Val Marietti has demonstrated that an “ordinary” person can do extraordinary things, her son Jace is has also shown he has an indominable spirit. When he was put on hospice the nurses weren’t so optimistic that he’d make it much longer. Just when things start looking bleak, Marietti notes, “[Jace] rallies and then he’s good. He’s a fighter.”
Editor’s Note: If you know of someone in this area who you believe should be featured in the “Giants of the Community” series, contact the Sun Advocate at 435-637-0732 or email editor@sunad.com