Fundraiser set to help Kona family whose daughter has rare eye disorder
When 9-year-old Jade Hao did the annual vision screening last March at Kealakehe Elementary School, there was one thing amiss: She couldn’t see out of her left eye.
Her mother, Hoolai Berman, made a followup appointment with an optometrist, thinking Jade needed to be fitted with new glasses. Instead, x-rays were ordered and the results revealed a mass in the back of her eye on the retina. What the mass was and why it had arrived was not known. Her parents never noticed anything out of the ordinary, and Jade had never complained about vision problems, only occasional headaches.
Jade and her family went to five different eye doctors on Hawaii Island and Oahu, seeking an explanation. Berman said it was Dr. Eugene Ng, a retina surgeon who thought the mass had to do something with a parasite. With the mass was growing in size and spreading immensely, he urged the family to leave the state to get the specialized treatment needed. He recommended Dr. Khaled Tawansy, founder of the Children’s Retina Institute in Los Angeles.
Berman and Jade embarked on “a journey to resolution,” leaving for California July 21. After several days of testing and even reviewing an old college textbook, Tawansy confirmed a diagnosis — Ocular toxocariasis. The family got the news shortly after Jade’s 1oth birthday, which she celebrated July 28 at Universal Studios. The surprise visit to the theme park was a welcomed, worry-free break from the constant medical visits.
According to the Centers for Disease Control and Prevention, toxocariasis is an infection transmitted from animals to humans caused by the parasitic roundworms commonly found in the intestine of dogs and cats. While anyone can become infected with Toxocara, young children and pet owners have a higher chance of becoming infected. People can become infected by accidentally swallowing dirt that has been contaminated with dog or cat feces that contain infectious Toxocara eggs. Although rare, people can also become infected from eating undercooked meat containing Toxocara larvae.
“Ocular toxocariasis occurs when Toxocara larvae migrate to the eye,” according to the CDC. “Symptoms and signs of ocular toxocariasis include vision loss, eye inflammation or damage to the retina. Typically, only one eye is affected.”
Pinpointing how Jade got this eye infection is difficult. The family does not have pets. Still, Tawansy was upfront about what that diagnosis meant. While toxocariasis is treatable with medication and surgery, he was unsure if or any of Jade’s vision would return, Berman said.
This month, Jade underwent a two-hour surgery, followed by several days of recovery. A recent check up showed her left eye is healing nicely and a test showed about 25 to 30 percent of peripheral vision was back. The family remains positive about her vision and hopeful that with each day, it will get better, Berman said.
Throughout this ordeal, Jade has remained “strong and spunky.” Never one to want anything sugar-coated, the West Side Eagles cheerleader and hula dancer has demanded and accepted honest answers her condition. Her courage, wit, spirit and ability to not just adapt, but strive forward continues to inspire, Berman said. Jade will have to continue to see doctors for followups, she added.
Jade and Berman returned home Sunday. Jade’s first day as a fourth-grader was Monday and her excitement for returning to school was infectious, growing faster and building momentum as the time approached, Berman said.
Being away from their Kona home was challenging. Berman said she left behind her husband, Jack Hao, and their other kids, Jonah and Joby. However, Jack did come to California for Jade’s surgery. Along with the doctor appointments and lab work, Berman had difficulty finding pharmacies that would take her out-of-state medical insurance and fill the needed prescriptions for Jade. The mother and daughter also had to find their way around an unfamiliar place and deal with several unforeseen obstacles.
“At times, it was hard and I felt defeated,” Berman said. But fortunately, they had endless support from family members, friends, doctors, specialists, their staff and strangers, she added.
A doctor’s receptionist linked them to the Pasadena Ronald McDonald House, a community-supported “home away from home” for families seeking advanced medical treatment for their critically or terminally ill children. It’s a haven for people who must travel great distances looking for treatments and answers not found near their home. In addition to lodging, volunteers provide meals, arrange special activities and provide errand transportation. Educational services, childcare resources and supportive care are also offered.
While there is a cost to stay at the Ronald McDonald House, it’s minimal — $15 per night per room. Berman said being there was “a blessing” and “humbling.” She described the Ronald McDonald House staff, volunteers and guests as warm, welcoming and helpful. Their support helped ease fears, frustrations and overwhelming stress, especially in times of limbo, as well as provided perspective and new friendships. “It was one big ohana,” she said.
The Big Island community and countless others have also lent their support to Jade and her family. A car wash fundraiser was held last weekend by Jack’s coworkers at the Royal Sea Cliff. Other friends of the family have been rallying together and helping organize fundraisers to assist in offsetting the high costs of travel, surgery and healing. When Berman found out about the fundraisers, she was moved to tears. In an attempt to pay forward the goodwill received, she hopes to use these events as an opportunity to raise awareness and educate people about this eye disorder and lifesaving places, such as Children’s Retina Institute and the Ronald McDonald Houses around the world.
Berman said she and her husband are grateful for the enormous outpouring of love, care and generosity received. Asking for such help wasn’t something the couple never planned to do; instead, they contemplated getting additional jobs, if needed, to pay the bills. Jack is a landscaper and Berman dances hula at a couple of resort luaus.
“We’re truly overwhelmed and blessed with amazing love ones,” she said. “We’re speechless.”
A benefit fundraiser concert will be held at 6 p.m. Sept. 4 at Big Daddy’s in Kailua-Kona. It will feature Na Hoku Hanohano award winning Sean Naauao, Lorna Lim, Bulla Kailiwai and G2G. There’s a $10 donation to attend.
Community for donations of items and gift certificates are also being sought for a silent auction, raffles and door prizes at the concert. To donate or for more information, call Kenneth Victor at 989-4616 or Mehana Kihoi at 747-5612.