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Mark Jones' Fundraiser:

Keeping Up With The Ketoneses

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Mark Jones

THE STORY:

 “Every day I wish I could take his place” (I wrote this earlier this year)
Today is the one year anniversary of Preston being diagnosed with Type 1 Diabetes. Prior to a year ago I didn't know anything about diabetes and I surely didn’t know how it impacts someone's life. A year ago (mother's day) was one of the most frightening days of my and our family's life. We rushed Preston into the emergency room at TGH in a panic with no idea of what was wrong. He lost 18lbs in approximately two weeks and only weighed 76lbs when we got to the hospital. As a parent there was nothing more I wanted to but to trade places with him. I'll admit I tried to stay strong on the outside and believe I did a pretty good job, but internally I was quite the opposite. I'm so grateful for the staff at TGH to quickly recognize the symptoms and test for Type One. Mind you, that if this would have carried on for another day or two, Preston may not have made it. After fighting for an hour or so to get an IV in his flattened dehydrated veins, Preston began receiving fluids and working his way back to recovery. I’m so glad that moment is behind us and I wish that neither child nor parent would ever have to experience what we went through that day. As we were leaving the hospital, we quickly realized the impact this would have on Preston every day of his life until there is a cure. We also realized the impact it would have on the entire family. For those not familiar with Type One diabetes, it means that your body no longer produces insulin, but without insulin you will die. The common things we take for granted when eating, exercising or growing up (puberty) can no longer be taken for granted without planning and action. Blood sugar can be a difficult thing to manage with all the variables that impact it. This requires a frequent monitoring of Preston’s blood sugar to insure he’s not too high or too low. Carbs and sugar make you go up and insulin makes you come down. It’s at times a very difficult balancing act, especially for a 12 year old boy. Prior to the technology Preston currently uses to manage his blood sugar and distribute his insulin, it was a manual process. That means, pricking your finger to squeeze a drop of blood onto the strip of a blood sugar meter to determine his level. Many times Preston was doing this every 30 minutes in order to determine if his blood sugar was moving up, moving down or staying steady. Insulin was then required to be injected by needle in his stomach to offset high BS readings while also injecting whenever he was going to eat. Eating not only includes meals (breakfast, lunch and dinner) but it also includes snacks and even the simple piece of candy. I never counted how many times in a day Preston would prick his finger or inject himself, but if I had to guess, it was 25 times and 10 times respectively.
Fast forward a year to today May 8th and Preston is doing great managing his Type One. He just weighed in at 104lbs with a great A1C level of 7.7. If you’re asking what is A1C (I didn’t know either until a year ago), it’s a person’s average glucose level over a span of months. He’s got a great doctor and a phenomenal team on call to help with anything related to his diabetes. He now wears a small device to help monitor his blood sugar (though not perfect but a huge improvement) while also wearing a small device to distribute his insulin without injection. We joke that if we put anymore devices on him that he may resemble Iron Man. This amazing technology allows us to monitor his blood sugar via an app on our phone compared to previously having to prick his finger for blood every time we wanted to know what his levels were. With all this change, I will say that Preston carries on every day like most children. He still plays sports, video games, stays up late, tries not to make his bed etc. Where he is different is that he’s part of a unique group of kids (only 15,000) that are diagnosed with Type One each year. His sugar levels impact the way he feels each day and will probably never feel normal. Too high is not good and too low is scary. Big swings from high to low and vice versa have an impact. So, I’m not even sure what normal really is for him.
I’m so grateful for Preston’s team of doctors. I’m so grateful for the technology that helps manage diabetes. I’m so grateful for the family that I have that works hard as a team to manage Preston’s diabetes (it truly is a family affair).
Lastly, I’m so proud of my lil man Preston! He had to grow up quickly, much quicker than any 12 year old should have to. I’m so amazed at the way he has taken this adversity head on and not complained a single day. When I say not a single day, I mean it. He’s had a right to complain about a lot, especially in the early days when his family was constantly asking him to prick his finger to check his sugar because we were nervous about it. This included waking him up 3-4 times a night to check and inject. He’s never complained about the days he didn’t feel well, though I believe he exaggerated a few of the times just to miss school. I’m so proud of the way that he’s not embarrassed or subconscious about his condition that requires him to inject in front of friends or in public. Speaking of that, his friends have been amazing by treating him the same way the always have. Sometimes kids make fun of the things they don’t understand, or that make someone a little different. Not the case with his friends. So year one is in the books and we celebrate the journey we’ve been on so far.
Some may ask why we celebrate the anniversary of his diagnosis? It is kind of weird to celebrate something that has a negative impact on your life but to me it’s a countdown to a cure. I’m not sure when that day will be but I confident that the tremendous research that is being conducted will yield a cure.
In closing, I have two wishes….first, I wish it happened to me rather than Preston (I wish that every day). Second, I wish for a cure. I can’t change the first wish but I hope I can raise awareness to impact the second wish.
I love you Preston!!! 

DONATE

To This Fundraiser

$525

MONEY RAISED
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  • Anonymous

    $250

  • Anonymous

    $50

  • Micki Fernandes

    $50

  • Brooke, Danielle and Mel

    $25

  • Nana Jones

    $50

  • David Jones

    $100

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7% Raised of$7,500 Goal

The Team: $525 TOTAL RAISED SO FAR

Donor Comments

David Jones

David Jones

DONATION: $100

1 year ago

Nana Jones

Nana Jones

DONATION: $50

1 year ago

Brooke, Danielle and Mel

Brooke, Danielle and Mel

DONATION: $25

Go get it Preston and Mark #findacure 1 year ago

Micki Fernandes

Micki Fernandes

DONATION: $50

So Very Proud of you Preston!!! 1 year ago

Anonymous

ANONYMOUS

DONATION: $50

1 year ago

Anonymous

ANONYMOUS

DONATION: $250

1 year ago