Luca & Finn's Story - Palmerston North
At the beginning of 2023, ten-year-old Luca lost all of the sight in his right eye. Mum Caitlin was always aware there were eye issues in the family – her retina is partially detached, and Luca had been diagnosed with optic nerve hyperplasia as a baby. However when Luca’s vision in his “bad eye” went from blurry to completely black, she rushed him to the hospital. The doctors ran a few tests and one approached Caitlin; “the doctor said this doesn’t look like optic nerve hyperplasia, it sounds like FEVR.”
FEVR (Familial Exudative Vitreoretinopathy) is a hereditary condition that causes vision loss over time. The retinal blood vessels don’t develop normally, leading to blood leaking at the back of the eye. Without intervention including surgery, a patient will slowly go blind. “It’s very rare which is why it was initially misdiagnosed,” explains Caitlin, “the damage that’s done is done for good, so Luca is now blind in one eye. But thankfully, they got onto his right eye really early.” At the time, the doctors needed to perform an angiogram which meant putting Luca under anaesthesia, as it requires intravenous injections. His younger brother Finn (four) was tested at the same time and both boys tested positive for FEVR. Unsurprisingly, Caitlin tested positively as well. 
All three of them needed surgeries over the following two years, meaning travel from Palmerston North to Wellington where they took place and many stays at Ronald McDonald House in Wellington. “I remember when Luca was a baby and had to be hospitalised due to a stomach bug,” explains Caitlin, “he was a breastfed baby, so he needed me close. I ended up sleeping on the floor of the hospital room. So when we saw RMHC during Luca’s first eye treatment, I was so relieved! I thought I would have to sleep on a chair in the corner of his hospital room.” The family have stayed at the House every time they come to Wellington for hospital trips, and Finn and Luca love it. “They don’t love the operations – but the House makes up for it. Every time we’re gearing up to leave for Wellington, I remind them that they’ll get to stay at Ronald McDonald House – and they’re thrilled.”
“Without RMHC we would have had to figure out how to afford expensive hotels. I haven’t worked for two years due to this as we’ve been between Palmerston North and the hospital, so we just wouldn’t have been able to cope. The place is a life saver; the staff are so friendly, and the kitchen is amazing.” The family stayed at the House during the holiday season last year, and they were so impressed by the level of effort the team put into decorating the House. “The boys were pretty excited to meet Santa at RMHC I must say – they loved their gifts too,” says Caitlin.
It has been a hectic couple of years for the family but things seem to be “calming down now,” Caitlin says. “We each have an eye surgery booked for later this year/early next year, and then we’ll have to travel down every six months for reviews.” When they need to stay overnight, RMHC NZ will be there for them. Living in rural Palmerston North with five children in total, the charity has been a godsend for the family, with Caitlin saying, “this time has been really stressful for the boys and for me – but having RMHC in our corner has made a world of difference. It brings some fun into what is a difficult situation. RMHC gives families like ours a lot of relief – thank you.”
If you would like to support our end of year campaign, Season for Giving, you can do so by donating today here - to help families like Luca & Finn's during the festive season.
