Helping families cope with a child’s grave illness
BY JIM HOWE
Families with a seriously ill child face all sorts of needs and stresses. A local nonprofit group is working to provide those families with a measure of both material and emotional support.
The Kara Fund was started in memory of Kara MacDougall, a senior at East Syracuse Minoa High School who died in 2010. She was diagnosed with liver cancer while an exchange student in Australia and returned home for treatment — from both the pediatric oncology team at the newly opened Upstate Golisano Children’s Hospital and from CHOICES, the pediatric palliative care service directed by Upstate’s Irene Cherrick, MD.
Kara did not live to see her class graduate.
The Kara Fund, incorporated in 2012, works to show families facing a child’s life-threatening illness — including cancer and other diseases — that their community cares about them. The aim is to follow in the spirit of Kara, whom family and friends describe as passionate about giving back to her community, as well as bright, energetic and athletic.
“We’re not looking to supplant any charity, but to augment services or to help a group that is not being helped,” said Mark MacDougall, Kara’s father and the director and president of the Kara Fund.
The fund channels its help in three principal directions:
-- Comfort care: For children in a hospital setting. The fund works with the Upstate Golisano Children’s Hospital, the Neonatal Intensive Care Unit at Crouse Hospital and CHOICES.
-- Home care: For children making the switch from a hospital back to their home. The fund works with Nascentia Health, an agency offering long-term care at home.
-- Family care: Direct support to families in crisis.
Here are a few of the ways that families receive Kara Fund support:
-- Family photo sessions when the child’s life expectancy is short, such as when an unborn child is not expected to survive. This can help with bonding and closure and provide a keepsake and is done through CHOICES.
-- Also through CHOICES, books and comfort items tailored to the individual relatives of a seriously ill child, including siblings and grandparents. Called the Pillar Project, it is designed to help everyone in the family cope with the child’s illness and death and the grief that follows.
-- Oral health care bags, with toothbrushes and other items, that are distributed by dentist Racquel Vlassis, DDS, when she instructs young cancer patients about the need for keeping up dental care, which is important to help decrease their risk of infection.
-- Comfort/gift bags for children with sickle cell disease, including heating pads, thermometers, water bottles and other items to help manage pain. Fund volunteers also helped at an event at Upstate for families of children with sickle cell disease, passing out treats and hosting a photo booth.
-- Gasoline cards, coffee cards and parking passes for Central New York parents whose baby is undergoing cardiac surgery at the Golisano Children’s Hospital in Rochester.
-- Comfort/gift bags and various supplies -- anything from a gift card to a toy or a blanket – for seriously ill children being cared for at home or in a hospital setting.
“We supply a lot of gift cards,” MacDougall said. The fund raises about a hundred thousand dollars a year, which pays for those cards and other supplies.
The group’s board contains people with a good mix of skills to help plan and carry out projects, says MacDougall. Some of the board members attended school and played soccer with Kara, such as Nicole Hurley and Allyson Rossi, who hope to keep the organization going well into the future.
“Reflecting on the difficulties the MacDougalls went through and continue to go through, I think we always want to know that others are around us and there for us,” said Hurley, the fund’s vice president. “It’s such an amazing feeling to be there for those in need; it’s priceless. Through the Kara Fund, we can assure families that, whatever the outcome of their child’s illness, they will always have another family here for them.”
Rossi, the fund’s treasurer, recalls that Kara was “very energetic, strong-willed and definitely was huge into giving back. We’re doing something she would be really proud of.” Both Hurley and Rossi noted that they and other board members are always trying to spread the word about the fund, in hopes they can find and help more people with unmet needs.
This article is from the spring 2020 issue of Cancer Care magazine.