Girl with Lyme disease going to specialist in U.S.

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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.

Organizations: Scotiabank

Geographic location: United States, Ontario

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Recent comments

  • Alison Trowbridge
    April 12, 2012 - 09:51

    To Chelsey and Angela- Hi, my name is Alison. I live in Ct., USA. I have had Lyme Disease since 2001. My youngest son got it in 1999. I just found this Canadian site while searching for some thoughts while having a spring "Lyme flare". If I can offer any advice or be of any help, please e mail me @allietro@aol.com. Lyme is an awful disease, scary too. I don't know what help I can be but please e mal. Have you gotten to pediatrician here in New England yet? Where are you going, perhaps I can find help for you if you are near by. Stay strong, this could be a long haul (the disease, that is) I too have neurologic (brain) stuff and it's not fun. The pain all over is depressing but you can rise above it and move forward. Don't GIVE UP! Best wishes to you and your family! Alison

  • LymeFamily
    January 07, 2012 - 15:59

    I am glad that Chelsey is getting some financial support. Her family definately needs it. However, I am aware of hundreds of Lyme kids in the states who do not get any financial support. I am happy that ppl have supported Chelsey financially and emtionally, but, the sad truth is that most Lyme diagnosed ppl do have have any support, emotional or financial because this disease is not recognized. Doctors, the national medical community and friends do not recognize the seriousness of this diseast or its consequences. My grandson goes to a famous and wonderful Lyme pediatrician in New England. I drive to his home in another state, then drive him to this doctor and home. It costs a lot of money and I also pay for his visits and labs since his medical insurance won't pay it. There are thousands of families who have lost all financial security through dealing with this disease. God bless you Chelsey and your family!

  • Papa G
    January 06, 2012 - 17:58

    F.Y.I all Scotia banks in Pictou Co. are excepting donations in trust for Chelsey

  • We Are
    January 06, 2012 - 12:58

    To Pictou resident. First of all you can't fix what you don't know. Now that the county has been updated on her condition things will happen. Also if you read the article, you would have noticed that Scotiabank has a fund set up, as of today. I know this because I have been to N.G already to contribute. Perhaps you could make a trip and practice what you said. This is about Chelsea, not you.

  • Pictou Resident
    January 06, 2012 - 10:48

    Why is the community not rallying for a benefit for this poor child and her family? The community can give benefits to those less in need, let's do so for this girl!! That's a benefit I would proudly support, would organize myself, if I had anytime of off work! Good luck Chelsey!!!!!

  • Marlene
    January 06, 2012 - 09:07

    I pray Chelsey a cure will be found for your lyme disease & that the outcome will be very sucessful for you & your family & that you wil have a full recovery. Good thngs happen to those who wait. I will keep you in my prayers. God Bless. ((HUGS)) & ((KISSES))

  • Kelly
    January 06, 2012 - 06:56

    Good luck Chelsey, we're all rooting for you!

    • stacy barteaux
      January 11, 2012 - 11:51

      I just wanted to say hang in there it does get better and you will have a long road ahead of you ..the pain comes and goes some days are better than others..I got lymes when i was 13 living in Nova Scotia 1991 Iwas very ill moved to Ontario where a dr finally figured out what i had and that was in 1992 my blood was sent and tested in the US and I am 37 now still some days the joint pain is behond bad the headaches come and go I was told we also have a lymes specialist in Cape Breton ..you will be ok now they can test and treat much faster and better .and for myself yogurt everyday helps .. my heart goes out to you and your family

  • Nicole
    January 05, 2012 - 22:59

    Not a day goes by that I don't think of you Chelsea. There are so many people who care about you and I hope and pray many will come forward and make this trip possible for you. Stay strong sweetie. Angela, we will always be here if you should need us. ((Hugs))) and Prayers. Nicole, Tim and boys