Friday, May 9, 2008

It's that time of year in the Allred (and van der Kooi) house

This is the letter we send to everyone we know in support of our dear son Jackson who suffers from the horrible life-altering disease of type 1 Diabetes. This won't be the last time you see this letter, we are just gearing up for this year's walk. If you have any spare money to give to this incredible organization we welcome it with open arms. Without further ado, here is this year's peek into our life.


Dear Friends and Family,
It hardly seems a year has passed since we last wrote to you on behalf of our son, Jackson, however so much has changed in our diabetes life in the last 12 months. This year we would like to give you a tiny glimpse into the life of this busy family of 5 and how we deal with a disease that is overwhelming and heartbreaking. We would also like to share some of the blessings of the past year.
Not one member of this family is unaffected by Jackson’s diabetes. We all know that life with diabetes stinks for Jackson, but we wanted to share how it affects the rest of this family too. As parents, we struggle with the limitations placed on Jackson by the disease and the insurmountable task of caring for him. We desire for his life to be as normal as possible within the confines of diabetes care, however we, as his parents carry the burden and the sadness and pain on our shoulders every day. Jennifer often spends hours on the phone with the pump company trying to find better ways to use the insulin pump and sensors on a 5 year old. Ken faces the difficulty of how to effectively fit into our family diabetes routine while also being away from home at work. We measure and weigh every morsel of food he eats both at home or out in restaurants. We both spend longs nights up and down trying to get blood sugars under control that we can’t explain. And then we must get up and do it all over again the next day with the bravest face possible.
This all naturally places stress and frustration on both Kenny and Kaden, who don’t understand why we don’t have certain foods and drinks in our home or why we can’t leave the house on a pump/sensor change day. In Kenny’s words, “it’s really hard to be his brother, you can’t eat whatever you want, you can’t drink whatever you want, and you can’t do whatever you want.” And Kaden doesn’t even have the words to describe his frustration, but most definitely understands that there is something different about Jackson. By nature of the disease, they even get less attention from us than Jackson, which creates jealousy and tension between brothers. We try to maintain a healthy balance of medical attention devoted solely to Jackson with plain ‘ole mom and dad time. It is a battle we are constantly fighting and will never win.
We fight very hard for the best care and most up-to-date technology for Jackson. When we chose to manage diabetes via insulin pump last year our choice in pumps weighed heavily on the company on the forefront of research and development in the form of Continuous Glucose Monitoring Sensors, or CGM’s. What these little beauties do is check the blood sugar every 5 minutes (that’s 288 times a day!!) by converting sugar in the interstitial fluid to a blood sugar shown on Jackson’s pump. Without too much medical lingo, it means we don’t have to check his blood glucose by finger poke nearly as many times a day. Ken worked his negotiating magic on our insurance provider to cover the cost of the CGM’s and allow Jackson to wear them without FDA approval. By inserting a tiny sensor with a really big needle into his backside, we are given the freedom and security of “knowing” his blood sugar all the time. We can make choices for his care based on pages and pages of data every month. It is phenomenal and has simply changed how we deal with his diabetes on a day-to-day basis. On the down side, it also means we have yet one more thing to attach to our baby and an additional piece of equipment to troubleshoot. Even with the best technology available Jackson is still in danger of serious medical issues related to type 1. Nothing in this disease comes without pain and that fact is not lost on us. It is hard to understand that we must hurt him to help him. For this reason, we continue to raise the very funds that have changed Jackson’s life.
The Juvenile Diabetes Research Foundation, JDRF, is the #1 non-profit funder of research aimed at FINDING A CURE for Jackson’s type of Diabetes-the same research that brought us the CGM’s. That is the reason we participate so fully in JDRF events, namely the Walk to Cure Diabetes. This year on June 14th, Jack’s Pack will join with the Fresno Falcons and walk to support this amazing organization. If you are interested, here are the ways you can help make a difference for Jackson.
1. If you are local, you can join our family team, known as Jack’s Pack, which consists of family and friends who collect pledges and walk with us. We provide a team t-shirt to every member of our team, young and old and have a great time celebrating Jackson’s life at the beautiful Woodward Park here in Fresno. Just give us a call and we will get you everything you need.
2. You can support our family with a tax-deductible contribution in any amount. You can either make a donation online at
www.walk.jdrf.org by entering Jack’s Pack and California under Support a Walker or mail donations directly to us (please comment and we will contact you with our address.

Thank you in advance for helping us reach our goal of $8,000 this year. We are blessed by the generosity shown on Jackson’ behalf.


God Bless You!

Jack’s Pack Ken, Jennifer, Kenny, Jackson, and Kaden Allred

5 comments:

The Cool Chicks said...

We can't wait to be there and walk with the family team again!!!

xoxo Amy

Michon said...

Jen, send me your addy. I wish I could come and walk with you guys. With the price of gas though I figure I could do better by you just making a donation.
good luck! I hope you get lots of pledges!

The Cool Chicks said...

You can let Jack know that Jason's ticket is now booked (I made him stay till tuesday - woohoo)

emelyn said...

Yippee!! GOOO Jack's Pack!!

Nicole said...

Best of luck to you guys! I hope you reach your goal!