Friday, January 22, 2010

Nephew News

If you've been reading my blog for awhile you may have seen a few posts about my amazing little nephew Cameron. I usually post something on his birthday like here and here.

The first time I wrote anything about him, I mentioned that he has a rare form of diabetes called Monogenic Diabetes (also called Neonatal Diabetes). He was born premature and was so tiny he just ate and ate and wasn't gaining much weight. But he was so happy and alert we had no clue. Here's a photo I took when he was a baby:

Finally, when he was a few months old, he crashed and it was discovered he had, what we thought, was Type 1 Diabetes. So poor little guy got had to get shots all the time and pricked to test his blood sugar level ALL the time. But my sister just didn't think things were right. So after some detective work (you can read more in depth on my other post and his bio on the Monogenic website) it was discovered he had a rare form of diabetes which is caused by a genetic mutation. And now he just has to take the pills a Type 2 person would take. Amazing!!

Oh, I should also mention that my sister and her family live in Anchorage, Alaska. A little while back, Cameron was asked to participate in the Guns N' Hoses hockey event where the New York Fire Department pared off against a team of Alaskan police and firefighters. The proceeds of the event went to the Anchorage chapter of the American Diabetes Association and the Scotty Gomez Foundation.

So here's a photo of my nephew at the event. I am so proud of him:

***Side note: This past summer my sister and I attended the first Neonatal Diabetes Day in London and got to meet the doctors from the UK who first discovered this genetic mutation and how to correct it. They are still working on Cameron's specific type of mutation. His type is even rarer and causes developmental delays.

Here's my sister with Dr. Fran Ashcroft and Dr. Andrew Hattersley

For more information, here's a few links:

An article about Lily Jaffe, the little girl with Monogenic Diabetes who's article my sister read and decided to see if Cameron had the same thing. Lily's Law in Illinois now requires physicians to report certain information to the Department of Public Health if a child is diagnosed with diabetes before 12 months of age. Here's another article about Lily's Law.

A YouTube video about the breakthroughs in Monogenic Diabetes.

An article about a life transformed by this breakthrough.

An article about another life transformed. My sister and I met Niona and she is a wonderful lady.

***Please, if you know anyone who has been diagnosed with early childhood diabetes, have them be checked for Monogenic Diabetes. This research is fairly new and many lives have been changed and improved.***


  1. I have never heard of this strain of diabetes. Thank you for making us aware.

  2. fascinating.
    Pleased to hear things have been better for Cameron.
    He looks like he was having a real ball on the ice.

  3. (sorry I'm so late with this!)

    What a neat opportunity! I read this to Kiddo and he thought it was wonderful that Cameron doesn't need so many shots anymore (he totally understands that!) and that he got to get out on the hockey rink ... although he can't understand why someone didn't give the poor kid some skates! ~LOL~