We're helping JDRF create a world without type 1 diabetes (T1D) where no one has to fear developing this serious autoimmune disease. By joining Team Ava and/or making a donation to JDRF, you can be part of the effort to improve the lives of millions of people affected by T1D and most importantly Ava.
In T1D, a person's pancreas stops producing insulin, which is essential to the body’s ability to get energy from food. It strikes both children and adults suddenly and is unrelated to diet or lifestyle. Managing T1D requires constant carbohydrate counting, blood-glucose testing, and lifelong dependence on insulin. With T1D there are no days off, and there is no cure.
Ava gets her blood sugar checked around 2:30am every night. We set our alarm and do a sleepy eye poke to her beautiful little finger that is covered in calluses from getting poked almost 10 times a day. Sometimes you have to poke her more than once, if you can’t get enough blood. No matter what her number is it’s still hard to sleep. If her blood sugar is perfect you are concerned that she could go low by morning. If she is low, you have to wake her and give her juice. If she is high you’re concerned about giving her too much insulin or not enough. You stand there exhausted trying to account for what she ate for dinner to cause the high and calculate the perfect amount of insulin to bring her down but not too much. You see, that is our biggest fear. Giving Ava too much insulin while she is sleep could cause what is called dead-in-bed syndrome. This takes the lives of the 6% of people with type 1 diabetes and haunts every parent of a child with this disease. We do our best not to think about this but it’s a reality. The first thing I do every morning when I go in to wake her up for school is feel her body for warmth. Only then can I breathe a sigh of relief.
Ava has to eat at the exact same time every school day otherwise it will throw her entire day off. If she doesn’t get her insulin by 6:30am she will be high when the rest of the class is having snack. There are many days when Ava has to sit on the side lines and watch her other class mates eat their crackers while she waits for her blood sugar to come down. If there is a birthday party at school Ava’s teacher sends me a picture of the dessert and estimates the size so I can try and calculate how many carbohydrates are in it. Absolutely every carb has to be accounted for in her diet.
There are 6 main care givers in Ava’s life. Jeff, Erika, Cay (Nana), Ava’s school teachers Ms. Kat and Ms. Virginia as well as Ava’s babysitter Cassie. The reality is that she is different and requires a lot of attention and knowledge to make sure she is cared for properly. Without the help of these amazing individuals we would never get a break, or be able to send Ava to school.
Ava currently wears an insulin pump which is set with a 2” needle every 3 days. We have a lot of anxiety about infusion set day because Ava cries every time. There are times where we have to hold her down to do it because she gets so worked up. We don’t currently have anyone trained to do this part of Ava’s routine. Mainly because she gets so stressed and it’s hard enough as parents to watch her go through this. But this means we can never leave Ava for more than 3 days at a time.
I think you’ve probably got a good sense of how Type 1 impacts our life. We’re so lucky that there have been so many medical advance and continues to be life changing research. JDRF is the only global organization with a strategic research plan to fight T1D. Every donation, big or small, from donors like you, allows JDRF to fund the critical research needed to find a cure.
Will you accept the challenge to make a difference in your community and Ava’s life by joining us? Just click “Join This Team” to become a team member and start fundraising. Or click “Donate to This Team” to make a donation.