Jacob’s Heart Beats for Santa Cruz
“You Can Handle Anything if you Don’t Have to Handle it Alone”
by Kevin Painchaud
Every parent’s worst nightmare is finding out that your child has a life-threatening illness. Your entire world is turned upside down. Where do you turn? What do you do? Your child becomes the only thing that matters. Things like food and bills become secondary. And for those thousands of residents in our community that do not have the financial means to take time off work to focus on their child, life seems insurmountable.
This is the reality for many folks in our community. One organization has embraced these families, and shown them love, support and community: Jacob’s Heart Children’s Cancer Support Services.
Jacob’s Heart is an amazing organization whose goal is to give support to families with children who have been diagnosed with a life-threatening illness. This organization, which has given support to over a thousand families in the area, was the brainchild of Lori Butterworth.
Back in 1998, Jacob, a 5-year old boy, was diagnosed with acute myelogenous leukemia, one of the deadliest forms of leukemia. Lori wanted to help Jacob’s family, so using her resources, she threw a fundraising party that raised enough money in one night so that Jacob’s mom was able to quit her job and be with her son in the hospital for a whole year. At that time, Jacob’s mom spoke words that have remained the cornerstone of the organization that bears her son’s name: “You can handle anything if you don’t have to handle it alone.”
Lori soon realized that there were far too many families left to navigate the treacherous journey of childhood cancer without support. So she gathered a group of friends and decided to cast a wider net to support more and more children with cancer and provide support for their families.
The fundamental model of Jacob’s Heart has stayed consistent over the past 21 years. It’s based on Abraham Maslow’s hierarchy of human needs. The most basic need is that of survival. When a parent hears the words, “your child has cancer,” their entire world is ripped from beneath them. All the safety that they know, everything in them, the fears, the immediate concerns are usually, “How am I going to survive this? How is our family, not just the child, going to survive this disease, and how is our family as a whole going to make it through this ordeal and come out whole again?”
“We start with addressing the family’s basic survival needs.,” says Butterworth. Nearly 80 percent of the families that Jacob’s Heart is currently serving are low income or quickly become low income because of the financial toll pediatric cancer takes on a family. We help with rent, phone bills, utilities, and provide transportation to and from treatment.
“Our children here at our local community are treated at Stanford or UC San Francisco, many miles from home. Our transportation program ensures that no child in our area will ever miss an appointment because of lack of transportation.”
Jacob’s Heart was picked as organization of the year last month by the Aptos Chamber of Commerce.
“Once we address the family’s basic survival needs, such as food, clothing, shelter, transportation, then we then help families restore a sense of safety and trust in the world,” says Butterworth. “We work closely with each family to help them navigate the healthcare system for their child, so that parents can make informed decisions about their care. We do a lot of medical translation and medical interpretation from Spanish and English to medical terminologies that they may not understand. We do a lot of education throughout the entire trajectory of treatment.”
Then the real heart of the program takes over, and Jacob’s Heart brings a sense of community, a family of families who share the experience. They have support groups, a therapeutic art program and two weekend camp programs that address the whole sense of love and belonging and community connection. The first is a camp called Heart and Hands, a weekend camp for families whose child is going through or has recently gone through cancer treatment. The other one is the Forever Loved Retreat — a weekend for families who have lost a child. Siblings suffer just as much, so Jacob’s Heart has an amazing sibling support program.
Jacob’s Heart has a heart-warming family support center located in Watsonville. It’s a safe place for families to get information about their child’s illness, receive emotional support and counseling…and fun. They even have a children’s recreation center complete with video games, air hockey, ping pong, a pool table and more. It gives the children a safe area to relax and just be kids.
The family center was a donation by Granite Construction. Granite gave Jacob’s Heart a building, but the community turned it into a home. The community has rallied around Jacob’s Heart and continues to support the organization, which relies solely on community donations to keep it going. The community and the families have made the Jacob’s Heart family center into a very special place. In fact, it has become a place that the kids never want to leave.
For more information https://www.jacobsheart.org
Jacob’s heart is always looking for donations and support.