PEI fisherman donates lobster to help child with life threatening kidney disease

Staff ~ The Guardian
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CHARLOTTETOWN - The tears come every time she thinks of the kindness of strangers.

Bobbi-Jo Griffin, her son Christopher and Khrista Higginbotham met for the first time in the Griffin's home in Charlottetown Saturday after the North Rustico lobster fisherman donated almost $1,000 to Griffin to help pay for expenses for Christopher's kidney disease.
 

Bobbi-Jo Griffin’s eight-year-old son Christopher has a life threatening illness that is shutting down his kidneys and no one knows his prognosis and even the doctors won’t yet speculate. In fact, there are only about a dozen cases of the disease in Canada. Its nickname is “salt waster” but its scientific name is Juvenile Nephronophthisis.

“The disease is progressive and there is no cure, but we don’t know yet when…we don’t know the length of decline.” It could be years or it could be weeks or months, she said. The family will know more at their next appointment with the doctors.

Last Christmas Christopher was diagnosed with the disease and at the moment he is in stage three. There are five stages. Right now he is beginning to have problems with his sight.

“He is in stage three of kidney failure, stage four is dialysis and stage five is a transplant…there is no cure for the disease and there are only about 12 (children) in all of Canada who have been diagnosed with it.” The disease “gets rid of just about everything his body needs. He craves salt so we give him extra salt and his hemoglobin stays quite low,” Griffin said during an interview in her Charlottetown home.

The next step for Christopher is dialysis and a transplant is inevitable after that.

He has to be taken to Halifax for treatment every month and that expense added to medications (some of his medicines are $60 per week) gets costly. To add to her problems Griffin does not have a vehicle and when the transplant is ready to be done she will have to remain full-time in Halifax.

This is where the kindness of strangers comes into the story.

North Rustico lobster fisherman Khrista Higginbotham has a mutual friend of Griffin’s and through Facebook she heard of her plight and decided to do something to help her. Higginbotam herself once had to have a child treated in Halifax so there was somewhat of a feeling of kindered spirits in the story.

She decided to sell lobsters by donation with all proceeds going to Griffin. She set up shop in her shed on the North Rustico wharf and as the heavy rain pounded on the roof she sold lobsters and raised approximately $1,000. Some lobster for the event was donated by other fishermen in the harbour.

When she delivered the money to Griffin Saturday it was the first time they had met and there were tears all around as Christopher and his friend sang a special song of thanks that they wrote for the occasion.

Geographic location: Canada, Halifax, Charlottetown

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  • Michelle Nadraszky
    June 11, 2013 - 09:57

    Hi Bobbi-Jo. My 13 year old daughter was diagnosed with Nephronophthisis in November of 2011 at the age of 11. We live in Alberta. Please contact me. I'd love to chat with you, etc. You can find me on Facebook or email me!

    • Melanie Reid
      June 11, 2013 - 20:33

      I have 2 children both boys ages 8 and 14 who both have Dent's disease a form of kidney disease was found through genetic testing found this article interesting and my kids also crave salt as they are numbers 4 and 5 with this in my family wpould love to chat with others Live in Ontario feel free to facebook me or email Thanks:)