Your Community » Stories of Hope
Finding the Light - One Family’s Journey in Coping with RP
Written by Jamie Marks
When Joshua Kozak was a toddler, his mom, Helaine, felt like something was just not right with his behavior in some situations. “Going to certain birthday parties made him cling to me even though he knew the children,” she recalls. Since birth, he had a very difficult time going to bed at night. When he did sleep in his own room, he would wake up in the middle of the night and become totally disoriented. He’d bang into the walls or walk into a closet.  When Joshua was seven, his eyes were examined during his yearly checkup, and Helaine told the doctor about the problems he was having in the dark. After his examination, the doctor handed Helaine a small piece of paper with two words, “retinitis pigmentosa,” written on it, and said, “This is what he has,” and walked out of the examining room. Helaine left the office in a daze with a diagnosis she had never heard of and could hardly pronounce. She had no information and no idea what to do next. She says, “My husband Bill and I cried for a week straight once we learned about what retinitis pigmentosa (RP) will do to Joshua’s vision.”When they went online to investigate RP, they found the Foundation Fighting Blindness. A few weeks later, Helaine and Bill Kozak found themselves at the Cold Spring Harbor Library attending an FFB Long Island Chapter seminar about assistive technology and vision loss. She remembers, “We were still in shock but happy to attend the seminar and get as much information as possible. I was lucky to meet Maria Costa, a director of development in New York, who knew our story and why we were attending. She introduced us to Wren and Jim McNiel and Karen and Nick Montagnese, members of the Long Island Chapter’s Leadership Group.” Helaine says that finding FFB was a blessing. That day at the seminar, the Kozaks met people with RP who lived productive and fulfilling lives, and they also learned that there was hope for a cure to save Joshua’s vision. Helaine said her new friends “saved a mom who was so sad. I will never forget them.” A few months later, the Kozak family participated in the Long Island VisionWalk. The support and generosity of their friends and family were awe inspiring. “Everyone rallied around us, and we raised almost $27,000,” Helaine says. The energy in the air, the laughter and spirit of all the participants helped turn her despair into hope, and the loneliness she felt just a few months ago was now replaced with a confident enthusiasm to do even more. Helaine also decided to take up an offer from Ron Kolber, a musician and family friend, who wanted to hold a benefit concert for Joshua. He and his band, The BBQ Boys, drew more than 200 people to Rock for Sight, and raised $5,000 for FFB’s mission. Thanks to FFB and the promise of research, Helaine is now looking to the future with hope. She recalls, “After the diagnosis, I was just sad, sad, sad. A year later, I am back to my happy self. I’ll have a sad moment every once in a while, but it’s good to feel happy again. It’s good to be able to enjoy Joshua in the here and now and not worry too much of what the future holds. I don’t necessarily pray for a cure for RP as much as I pray for a way to stop the progression. I don’t want to be too greedy.” |
