Family and friends are rallying around a lifetime Elmira resident and her family through a difficult diagnosis.
One month ago, Laura Verbeek-Aregay’s nine-month-old baby, Kiya, was diagnosed with retinoblastoma, a common form of eye cancer, in both of her eyes. This diagnosis came after Verbeek-Aregay noticed issues with both eyes, including a glow in one and a decline of tracking ability in the other.
“It’s kind of like a white halo around her eye…. I just remember seeing a Facebook post about it saying, if there’s a glow in your child’s eye, take them to the doctor immediately. So I started doing some research on my own. And then I honestly kind of knew it,” said Verbeek-Aregay who also has a two-year-old daughter with her husband, Agazi Aregay.
After an optometrist indicted that he thought Kiya had the condition, they took her to Sick Kids Hospital in Toronto.
“At the beginning, we started through emergency. I literally called them two times a day and was like, ‘we need an MRI for her, get us in, please – it’s important,’ because every day I saw her deteriorate – her eyes were getting worse and worse every day,” Verbeek-Aregay explained.
As a mother seeing her child go through such a thing, Verbeek-Aregay was in shock, she said.
“I don’t even know if I still fully processed it yet. I’ve just been in go-go- go mode – give her the help she needs. You don’t ever think that your kid is going to get cancer. You hear that about other people, but [you] don’t ever think it’s going to happen to you,” she added.
A person with retinoblastoma is missing a gene that protects the eye from getting tumours, and it is the most common type of eye cancer in children. Although this form of cancer has a high survival rate, Kiya will require six months of chemotherapy. This is administered via an IV for two to three hours on successive days.
That, however, is just the beginning stage of her treatment, Verbeek-Aregay explained. The total length of treatment is about one-and-a-half to two years.
“From there, they’ll decide what other treatments they need to do after. It could be lasering, some type of surgery, but they need to at least get the tumour shrunk down a little bit before they can do any other options.”
While the chemo is covered by OHIP, some costs, such as medicine, are not. One of the meds Kiya needs costs $2,000 a month, while the others are a few hundred. The only way it would be covered is if the family went off their current insurance plan, meaning they would lose it for any unrelated health costs not covered by OHIP.
“It doesn’t make sense. Why wouldn’t the government just cover it for everyone? So that’s kind frustrating,” Verbeek-Aregay added.
Accommodation in Toronto is another expense not covered by any type of insurance.
However Verbeek-Aregay said the family has seen a great deal of support from the community, including through two local churches that have offered gift cards for gas and food. People they don’t even know are also making an effort to help.
“Some of my friends’ grandmas are adding us to their Bible studies, so I feel like it’s really like circulating it. So many people are praying, which is amazing. I will never say no to prayers, and it’s always welcome,” Verbeek-Aregay said.
“It’s amazing to see how much the community has just stepped up to help us.”
Donations to the family can be made viawww.givesendgo.com/kiyasjourney
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