Chelsey Livingstone-Rector, 11, who is fighting Lyme disease, now finds she needs to wear sunglasses indoors because of her sensitivity to light. Her mom, Angela Livingstone, right, says the next step will be to take her daughter to a specialist in the United States for treatment – a further financial setback for a family currently paying $800 to $1,000 for Chelsey's medications. See story Page 3. Adam MacInnis – The News
KENZIEVILLE – A county girl battling Lyme disease will have to be sent to the United States to see a pediatric specialist in the next few weeks.
Chelsey Livingstone-Rector, 11, was bitten by an infected tick when she was just two years old and living in Ontario. She wasn’t properly diagnosed, however, until last year, even though her mother, Angela Livingstone, brought her to doctor after doctor.
Chelsey is now seeing a leading specialist in Lyme disease in the province, but so far, she hasn’t been responding to medications. It’s now feared that the disease has centred on her head.
“They think the disease is focused on her head because she’s getting a lot of headaches now,” Rector said. “We know her short-term memory is very bad, and now her eyes are very sensitive to light, it’s so bad she has to wear sunglasses inside.”
It was a “miserable” Christmas for Chelsey, who spent most of the holiday in pain and nauseated from the most recent medications she’d been prescribed, Rector said.
“We saw her doctor (Tuesday) and he said we’d have to see this specialist in the States,” she said. “It’s a blow to us – more or less because it means we can’t fix her. It’s so hard as a parent to know you can’t give your child medication and have her get better tomorrow. She’s in pain all the time and the doctors think the only reason she’s coping is because she doesn’t remember a time when she wasn’t in pain.”
The trip will be hard on the family, which already shells out between $800 and $1,000 per month for her various medications, because Chelsey’s insurance won’t cover their travel costs or any hospitalization she needs while she’s in the U.S.
“We hope we’ll be going soon, but at the same time, we don’t want it to come because we have no idea how we’ll pay for it,” Rector admitted. “We’re not 100 per cent sure how we’re going to get there. We’ll do what we have to do, if we have to sell something, we will – we’re going to get her there, get her better, whatever it takes.”
A bank account has been set up for Chelsey at Scotiabank – anyone wishing to donate can see any teller to make a donation – and some friends are talking about planning a benefit, Rector added, although no plans have been firmed up yet.
But, she said, the community has been very supportive of Chelsey’s struggles.
“Right before Christmas, I went into Shopper’s Drug Mart for her medication, and when I asked how much I owed them, they told me nothing – someone had gone in and made an anonymous donation of $100 for me to use for her medications,” Rector said. “I was just amazed – I don’t know who did it, but it was really great, it made my day. It meant a couple of extra dollars in my pocket for some of the other things she needs.”
Another man, she said, knocked on the door to the family’s home and passed her $100 and said he didn’t want any thanks.
“I can’t believe the generosity of people we don’t know too well,” she said.
It’s expected that the family will be given a date for their appointment with the specialist within the next few weeks.