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.***

Happy Birthday!

So my little nephew is turning five today. I can't believe it's been two years since I've seen him!

He's actually not that small anymore. He's one tall kid! Here he is with his mom.

Happy Birthday!!!

Happy Birthday Little One

Today is my nephew's fourth birthday. I can't believe he's that old! I remember watching him when he was just a few months old. Here's us going on a pretend trek indoors:

He's gotten so athletic....he's got quite the arm:
And he's so lucky he's got so many cool toys...I'm sort of jealous

It's sad because he lives in Alaska so we don't get to see each other very often. And the last time I hung out with him a lot, he was sooo tiny! But at least I can say "hi" to him on the phone every now and then :)

Ol' Blue Eyes

I was granted permission (via my sister) to post photos of my nephew since she says they read my blog together. That's so cute. So I am going to gush a bit because he is adorable. I took care of him for a few months after my sister went back to work after he was born so we really bonded. I miss him a lot.

I like to call him Ol' Blue Eyes because A) I like Frank Sinatra and B) Look at those eyes!!
My sister and the little cutie. I just can't get over his beautiful eyes :)
He loved hanging out with his aunty. And yes, socks make excellent gloves.
He was born pretty early about one or two months early. (You can tell I've never had kids because I don't really know about the whole measuring time by weeks) :) He was so so little but had such a great laugh and smile.

The other reason why we was so small is because unbeknownst to all of us he has a extremely rare form of diabetes. He was always so hungry and ate all the time and didn't gain much weight. Finally he crashed and they diagnosed him with Type 1 Diabetes. He was put on regular insulin shots which helped tremendously and he fattened up to a chubby little baby. It was sad though because he couldn't snack or eat like a regular baby. Ever few hours he was pricked and tested to see if his sugar level was high or low. He had to have shots before he ate...shots in the morning...so so sad.

But something still wasn't right. He has some developmental delays and the insulin shots didn't affect him sometimes the way it should. It wasn't until my sister was shown an article about a rare form of a genetic mutation that looks like Type 1diabetes but really isn't. It's called Monogenic Diabetes. His story is listed on the website if you want more information. Tests for Monogenic Diabetes had been done in the U.K. and just a hand-full of children in the U.S. had been diagnosed. If he had this, it was treatable by just taking some pills every day. No more shots!! My sister sent away his blood test and months later she found out that yes!! he has this gene mutation. The little guy went to treatments in Chicago for a few days and now he just has to take pills everyday. He is only the seventh or eigth kid in the U.S. to be diagnosed with this. What a miracle!!

What's amazing is that none of the doctors in Alaska figured this out. If my sister hadn't read the article about a little girl diagnosed only a few months earlier, and they hadn't gone out and asked for the test themselves, they would never have known he had this type of diabetes. My sister actually even emailed the doctor listed in the article and he personally responded. It was amazing how it all worked out. My sister is quoted in the section about my nephew saying "If you know there is something wrong with your kid, keep looking, and eventually you will find the answer," she says. "I knew his developmental issues and diabetes were associated. People tried to tell me he had autism, and lots of other things, but I knew that wasn't it."

This is him kissing daddy's truck last summer:

My nephew is now three and a half, going to a little pre-school for a few hours each day. He just said "aunty" (I love it!). When I get more recent photos I'll post them :) You're lucky I only used photos I have at my work computer :)

Oh...and yes...God does answer prayers.