Martin Rajkovich Children’s Fund helps sick or disabled kids
Savannah Cecena, 4, and her family will never meet Martin
Rajkovich, a local orchardist who died June 7, 2007, but in recent
weeks the man touched their lives in an unexpected way.
Savannah was born with craniosynotosis, a disorder that caused
the bones of her skull to fuse together too early. While most
babies are born with a soft spot, she did not have one. Savannah
also suffered from hydroencephalus, a build-up of fluids in the
brain that puts pressure on the brain and can cause damage to the
tissues
– she still has a shunt to drain the fluids that build up.
Savannah suffers from cerebral palsy. The combination has left her
with some motor delays – though she can put weight on her legs, she
can’t walk on her own and she has trouble holding her head up – and
some cognitive delays.
Martin Rajkovich Children’s Fund helps sick or disabled kids
Savannah Cecena, 4, and her family will never meet Martin Rajkovich, a local orchardist who died June 7, 2007, but in recent weeks the man touched their lives in an unexpected way.
Savannah was born with craniosynotosis, a disorder that caused the bones of her skull to fuse together too early. While most babies are born with a soft spot, she did not have one. Savannah also suffered from hydroencephalus, a build-up of fluids in the brain that puts pressure on the brain and can cause damage to the tissues – she still has a shunt to drain the fluids that build up. Savannah suffers from cerebral palsy. The combination has left her with some motor delays – though she can put weight on her legs, she can’t walk on her own and she has trouble holding her head up – and some cognitive delays.
But on a recent morning, she was able to scoot herself around in a specialized piece of equipment that helps her hold her head up and move backward or forward without assistance from others.
Savannah is the first recipient of a grant from the Martin Rajkovich Children’s Fund, an endowment Rajkovich set up with Community Foundation for San Benito County before he passed away.
The walker-stander allows Savannah to stand up and put some weight on her legs as she steps back and forth, with wheels that make it easy to move and plenty of support for her head and torso.
Request denied
Nixon said she first heard about the children’s fund from a friend who suggested she look into it as an option to get the walker-stander, which the family says has been denied by state services as “not medically necessary.” The family is in the process of appealing the California Children’s Services decision – to qualify for the state program, the child has to have a disorder or illness that is covered by CCS, the family has to make below a certain income level or the cost of treatment has to exceed 20 percent of the family’s gross income. Savannah’s conditions are not specifically listed as conditions covered by CCS, except for cerebral palsy.
While they were waiting for the appeal, Nixon learned of the children’s fund through Community Foundation from a friend who suggested she apply.
“I called and spoke with Gary (Byrne) and asked how to apply…” Nixon said. “We came in and had a meeting. I was amazed and overwhelmed that we didn’t have to jump through hoops.”
Stephanie Hicks, the director of Community Outreach and Leadership Development for Community Foundation, coordinated the process for the family. Nixon signed a consent form to allow access to Savannah’s medical records. After getting a recommendation of what kind of equipment would be best for Savannah from a physical therapist, Hicks worked with American Medical Supply to get it ordered.
The family estimates the walker will last Savannah at least five years before she outgrows it.
Children’s fund
Rajkovich met with Gary Byrne, the executive director of Community Foundation, to set up the parameters of the endowment. He was clear on one thing – he wanted to help the families of children with chronically ill or disabled children, but he didn’t want the money to be used for medical expenses that were covered by insurance.
“What Martin wanted was a ‘Make-a-Wish’ just for local residents,” Byrne said. “He had a lot of farm workers and helped their children. He did a lot.”
Byrne said initially Rajkovich wanted to start the endowment anonymously, but Bryne talked him into putting his name on it.
“He said, ‘When I’m dead, I don’t care who knows,'” Byrne said, adding that he is hoping having a name on the fund will encourage other donors to give.
Thus was born the Martin Rajkovich Children’s Fund – a grant that is available for children under 19 years of age who live in San Benito County and who are under the care of a doctor for a critical or chronic illness.
The money can be used for a variety of things including equipment or accessories to enhance a child’s quality of life; special therapeutic treatments outside of the medical field; transportation, respite care and family counseling; or special recreational travel arrangements.
“He knew what he didn’t want to spend it on,” Byrne said. “I’m thrilled to see his gift realized. This is just the beginning.”
The grants will be given from the interest for the permanently endowed fund, which was originally part of Rajkovich’s IRA account.
“All his life, he never got to use it,” Byrne said.
The application for grants from the children’s fund is available online at www.cffsbc.org, and Byrne said they have a couple more applicants under review now. The grants will be given from the interest earned each year on the endowment. The grants can be for other services or equipment for the children that are not covered by insurance. It can be used for transportation costs to help a child’s family get to treatments, such as a child receiving cancer treatments outside the county, or even for a family to take a vacation to get some respite from the illness. The application does not have a specific deadline so families can apply throughout the year.
“It’s not just for the child, but to give the family a little bit of joy,” Byrne said.
Gaining independence
Savannah clapped her hands and smiled as she moved across the hallway at the Community Foundation office, enjoying the first bit of freedom she’s had in her life.
Her mother said before they got the walker, they had a hand-me-down wheelchair that didn’t really do much to help Savannah take the next steps. With the walker, Nixon said, “the next step is to be able to walk.”
She commented that Savannah’s teachers are excited about the opportunities the walker will allow them to work with Savannah since she will be able to stand upright for activities at school. Nixon also said she’s noticed that since Savannah is in the walker she’s become more interested in her environment than she used to be.
“We’ve already noticed the difference,” Nixon said.
Nixon said when Savannah outgrows the walker, the family wants to donate it to another family in need. She’s also picked up pamphlets from the Community Foundation on how to donate.
“I’m so thankful, we got the help we needed,” Nixon said. “They gave her her mobility. She can go all over my house. She didn’t have that option before.”
Hicks and Bryne said they are encouraging medical professionals to recommend families for a grant, and said they will be working with other agencies that help children who are sick or disabled, such as Jacob’s Ladder and the Make-A-Wish Foundation.
“We are here to serve the community,” Hicks said. “It’s all about building endowments. This is a great example of what an individual can do to make a difference.”
The News To You
Families with a child who has a critical or chronic illness who want to find out more about the Martin Rajkovich Children’s Fund can visit www.scffsbc.org or call 630-1924.
For families or residents who would like to donate, the Community Foundation for San Benito County offers the Friends of the Foundation program, where adults can donate $35 and children can donate $5. The money supports a variety of grants for arts and culture; education and youth; health and social services; agriculture and environment; community enhancement and economic development.
