What are the odds?
by Sandy Lindsay

September 12, 2016


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The Campbells meet the Littles
(L-R) Erin & Chad Little and Katelyn & Adam Campbell
in front are their children ... Harper & Olivia Little and Alan Campbell

There is a one in 200,000 chance of having a child with Cystinosis which means a one in three million chance that you will ever meet a family who has that child.

In fact, there are only some 2,000 people with Cystinosis in the world and only about 100 in Canada.

So ... what are the odds that you will meet two children with Cystinosis in the same room at the same time? 

That's what happened on Saturday, September 10th (2016) however in Saugeen Shores.

The day was the fourth annual 'Swing, Shoot and Liv' Classic Golf Tournament that was started as a fundraiser by Erin and Chad Little, whose daughter Olivia was diagnosed five years ago with Cystinosis. To see the 1st Golf Classic  Click Here

All proceeds from the tournament go toward research into a cure of Cystinosis because, given that it is so rare, there is no government funding of any kind for either research or individual assistance.

Little did golfers know on that day that, while they were there for Olivia Little and research, they would also meet another child recently diagnosed.

In a moving talk, Erin Little introduced the family who is now experiencing living with the same disease.

Olivia was diagnosed five years ago, and, in April of this year (2016), three-year-old Alan Campbell of Wallaceburg was also diagnosed with the same disease.

"We didn't know what was wrong," said Alan's mother, Katelyn Campbell.  "Our little boy wasn't growing and, his skin was grey and his stomach was distended like children you see who are suffering from malnutrition.  We took him to doctors but there was no-one who could tell us what was wrong.  Then, we went to see a nephrologist (kidney specialist) and he diagnosed Cystinosis."

What the Campbell family didn't know at the time was that the nephrologist was the same doctor who knew Olivia and her family.

They say that things happen for a reason. While that may or may not be true, it was through that doctor, that the Campbells and the Littles found each other.

"Meeting the Littles completely changed everything for us," says Katelyn Campbell, "and made everything more bearable.  We gained more knowledge about things like administering medications and diet and Alan is feeling so much better."

Click the orange arrow to read the second column

According to Campbell, Erin Little has given many amazing 'tips' to help the family that even physicians don't know anything about.  They are tips about everyday living for a family experiencing Cystinosis.

"The Littles are so incredibly positive," says Campbell, "and they have given us so much hope."

What is also a given is how beautiful, loving and happy these children are. 

One can only hope that a cure for this disease will soon be found.

What is Cystinosis?  Click Here

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Tuesday, September 13, 2016