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BY HELAINA N. HOVITZ | Just one year after Myra Ianakieva, 8, was diagnosed with leukemia, her father lost his three-year battle with Hodgkin’s lymphoma.
Fighting to remain strong for her sick daughter while mourning the loss of her husband, Myra’s mother, Elena, also had to figure out how she was going to put food on the table and handle all of the medical expenses on her own. Thanks to Friends of Karen, she didn’t have to worry — and the organization offered her much more than money.
In addition to financial support, Friends of Karen, a 33-year-old New York nonprofit, provides long-term emotional support for families coping with a child’s life-threatening illness.
Last Tuesday, over 300 “friends” flocked to a rooftop at 2 Desbrosses Street in Tribeca to celebrate Myra’s good health and to raise funds so more families can benefit from the organization’s mission.
“When a child has cancer, it’s too big for any family to handle on their own,” said Nancy Mariano, regional director of the program. “Nobody is prepared to navigate the world of childhood cancer.”
What makes Friends of Karen unique is its focus on full-family support for as long as it is needed. Along with providing financial assistance for illness-related expenses as well as rent, utility and car payments, the organization offers emotional support for the whole family through counseling and art therapy. If the sick child does not make it, Friends of Karen helps the family through the grieving process and with funeral arrangements and continues to support the family on an as-needed basis.
“Other organizations are short term and focus solely on the child, but we’re here for the whole family for as long as they need us,” said Executive Director Judith Factor.
When parents become overwhelmed, siblings inadvertently become “forgotten,” even though they, too, have special needs. Friends of Karen’s Sibling Support Program helps children cope with the changes that take place when their brother or sister falls critically ill. Expressive art therapies, including painting, music, dance and drama, enable the child to identify feelings and fears and find effective ways to cope.
Michelle Paige Paterson was honored at the ceremony for her decade-long work with EmblemHealth, but was stuck at home sick.
Her husband, former governor David Paterson, accepted the award on her behalf, and was grateful for the opportunity to learn more about the organization. He was especially impressed with the Sibling Support Program.
“When I was 11 years old, my brother was hit by a motorcycle and fell into a coma. His recovery was long and brutal,” Paterson explained. “I still get chills when I think about it.”
Also in attendance was Priscilla Goma, 32, a former child in the program diagnosed with Hodgkin’s lymphoma at age nine. She fondly remembers how programs like Holiday Adopt-A-Family helped provide presents for Christmas and food on Thanksgiving.
“We wouldn’t have been able to afford it without their help,” said Goma, who currently volunteers for Friends of Karen mentoring sick children and teenagers.
Myra finished three years of treatment in February and is now cancer-free. She made sure to thank Jessica Dunn, her family’s social worker, for her continued support.
“Thank you for taking care of me, bringing me presents, and playing with me,” Myra said. “And for talking to me about everything.”
Myra’s mother added that Jess’s advocacy had been “priceless.”
“There’s nothing Jess wouldn’t help us with, from health coverage to electric bills,” said Elena. “She is one of the most important people in our life.”
There to close out the ceremony was former American Idol contestant Robby Rosen, 17, who sang Myra an original song called “Make It Through.”
Friends of Karen was founded in 1978 by Sheila Petersen, a concerned neighbor who rallied community support for Karen MacInnes, 16, when she was diagnosed with Lafora’s disease, a rare genetic illness. Friends of Karen has helped thousands of terminally ill children and their families, 60 percent of which live in the city’s five boroughs, and currently provides support for 260 children in active treatment.
“We help keep families together and emotionally stable,” said Rhonda Ryan, who has been a social worker with the organization for over 20 years. “Whether the child lives or dies, 99 percent of families are survivors.”