Lifting Spirits

Supporting families with critically ill children.

“Your child has cancer.” For parents of well children, the phrase is too frightening to contemplate. Yet, families hear those words with each dawning day. The lives of such families change forever as they begin the devastating journey filled with doctor visits, long hospitalizations, soaring medical bills and the trauma and fears that come with caring for a seriously ill child.

Families in Manhattan can count on Friends of Karen to help along the way. With offices in Manhattan, Westchester County and Long Island, the respected nonprofit supports children from birth to age 21 with life-threatening illnesses, such as cancer, and their families in the tri-state area.

Since its inception in 1978, Friends of Karen has been providing emotional and financial support to families. The organization guides families in navigating the difficult world of childhood illnesses, offering a means to cope when a child has been diagnosed with a critical illness. Over the past 32 years, the organization has supported more than 4,200 critically ill children. In accounting for siblings, Friends of Karen has touched the lives of more than 10,000 children.

Friends of Karen is named after Karen MacInnes. When MacInnes was 16 years old and suffering from a terminal illness, her parents brought her home from the hospital to live the rest of her life surrounded by the people she loved. Sheila Petersen, a family friend, reached out to the community to help the MacInnes family pay for the teen’s round-the-clock care. The response was amazing. Generous contributions from neighbors and strangers ensured that MacInnes received the care she needed. The financial support also gave MacInnes and her family the gift of time together during the last few months of her life.

When MacInnes died, Petersen used the remaining funds to help other families. And now, more than three decades later, Friends of Karen supports more than 250 children and their families every single day. One supporter recently said, “Friends of Karen is the glue that keeps families together during the most difficult time of their lives.”

Families with seriously ill children have their own needs, and most cannot afford the expenses of caring for a critically ill child. On top of that, many parents decide to leave their jobs to stay with their ill child. This results in plummeting incomes just as the child’s medical bills begin to mount. Many parents also become overwhelmed and exhausted from traveling to doctor appointments, hospitals and treatments for their ill children. Hours spent sifting through medical bills and the emotional and financial difficulties caused by the disease only add to the angst. Siblings of ill children have personal challenges, too. Many find themselves in uncharted territory as they try to make sense of a brother or sister’s illness while grappling with feelings of guilt, anger, anxiety and fear.

Fortunately, Friends of Karen’s amazing social work team is available to help family members of critically ill children. The team has chosen the fields of illness and grief as their life’s work. The social workers’ compassion, experience and skills enable them to form significant bonds with families. The social workers support the entire family throughout the child’s illness— often for years. They regularly travel to the family’s home or the child’s hospital room to ensure that the family’s needs are being met. In the process, they give parents the capacity to care for all of their children, enjoy their time together, and remain emotionally and financially afloat.

Families that have leaned on Friends of Karen say they don’t know where they would be without the organization’s assistance. People in the Friends of Karen organization know the phone calls to make, the people to contact and the answers to the questions that families ask. Consequently, families remain stable and intact.

Services administered by Friends of Karen are comprehensive. They include emotional support; advocacy assistance with issues concerning treatment, insurance and education; and financial support to help pay illness-related expenses, such as medical co-pays, medical bills and basic living expenses like rent, mortgage and utility bills. Such expenses are often too much of a burden for parents who have left work to care for an ill child. Friends of Karen also helps with funeral expenses, provides bereavement support, offers special assistance for young siblings and assists in paying for childcare for well children. This gives parents breathing room and extra time to focus on their ill child.

Friends of Karen’s services do not end there. Recognizing that no family should have to choose between clothing, feeding their family and paying for a child’s medical care, the nonprofit sends supermarket food cards and Thanksgiving dinners to most financially strapped families. The organization also ships birthday and holiday gifts as well as back-to-school supplies to ill children and their siblings. With the assistance of many wonderful donors and volunteers, Friends of Karen sent back-to-school supplies to 559 children this year, as well as $16,750 in gift cards for clothing. Last year, the donors helped match the holiday wish lists of 773 children to allow families to celebrate the season and make children’s dreams come true.

Most parents learn about Friends of Karen from their social worker at the hospital treating their child. Due to its excellent track record, Friends of Karen works with 25 major hospitals in the New York metropolitan area, including Memorial Sloan-Kettering, Columbia Presbyterian, NY Presbyterian/Cornell Medical Center, The Children’s Hospital at Montefiore, Mt. Sinai, Yale-New Haven Children’s Hospital and NYU.

Visit www.friendsofkaren.org for more information, volunteer opportunities and other ways you can help. Friends of Karen can be reached by phone at (800)637-2774 and by e-mail at info@friendsofkaren.org.