Addies Story and our Goal

This blog is about my little niece Addie. Addilyn was born October 1, 2007 and like a lot of babies was always a little fussy and did not always seem so comfortable. When she turned about 9 months and was eating a lot of “normal” food her belly kept getting bigger. For about 4 months we would joke about Addie’s big belly and thought maybe that is just her build. When she was 16 months old she started having very bad diarrhea and began to throw up daily. Her Mom Katie took her to the doctor several time and each time he would recommend some foods to thicken her stool and told her nothing was wrong. Addie continued to lose weight, could not keep much food down and her stomach looked like it was about to pop.
By this time Addie had gotten so sick that she had barely walked in over a month. She no longer played or even smiled. She just layed on the couch. She would blow out of her diapers several times a day and hardly ever held down a meal. One day while Katie and I were in the mall, we noticed other kids her age sitting up strait in a stroller playing with toys. We then looked down at Addie and realized she was always just slumped back, not having the strength to even sit up straight.
Addie was so lifeless and we knew she needed immediate attention so we took her to the ER. We knew in our guts that something was not right and we were really fearing for her well-being. Luckily in the ER she had a great nurse that immediately sensed something was wrong too and finally got her the attention she needed.
The same day Addie was transferred by ambulance to the Madera Children’s Hospital. They had amazing doctors that were able to diagnose her problem but also discovered another; intussusception which they were able to fix to laparoscopic surgery.
After being sick for over 6 months, Addie finally had a diagnosis. It turns out that she has Celiac Disease. She is not allowed to eat anything that has Wheat, Barley, Rye or Oats. This disease will be with her for the rest of her life. She has been on a Gluten free diet for the past 3 months and she has been doing great! She is actually running around playing. She has never ran before, she had always felt so sick. She got her first bruise and scratch the other day. We had to admit that it was kind of nice to see her bump her head and get some scratches on her legs like most toddlers have. We were just so glad that the problem was figured out. Katie and Steve, Addie’s parents are just so thrilled that their little girl is getting healthy and is happy!
Luckily there is allot of gluten free food available. Each day is getting easier to have her on the diet. Katie just has to make sure she has food ready for Addie in case they go out or eat over at someone’s house. As Addie gets older, I am sure she will have times where it will be hard. At school functions or birthdays parties when she does not have her pre-prepared food I am sure she will sad she will not be able to eat with everyone.
On May, 2 Katie, my sister Becky, our Mom and I went down to Pasadena for the Annual Celiac Convention. It was so much fun and we learned allot. It blew me away how many people are affected by this disease. We were all just grateful to learn that if you manage your diet you can expect to live a full life and in the meantime lead a healthier lifestyle.
Here is a list of the symptoms of Celiac Disease. All the symptoms that are in bold Addie had.· Recurring bloating, gas, or abdominal pain· Chronic diarrhea or constipation or both· Unexplained weight loss or weight gain· Pale, foul-smelling stool· Unexplained anemia· Bone or joint pain· Behavior changes/depression/irritability· Vitamin K Deficiency· Fatigue, weakness or lack of energy· Delayed growth or onset of puberty· Failure to thrive (in infants)· Missed menstrual periods· Infertility male & female· Spontaneous miscarriages· Canker sores inside the mouth· Tooth discoloration or loss of enamel
Celiac Disease if often over looked. It takes years for many people to get diagnosed. If you have any of these symptoms ask your doctor to do a blood test for you. It is amazing how much better you will feel if you take gluten out of your diet. Within a week Addie was like night and day!
We have joined an organization called Team Gluten Free. Team Gluten-Free™, a project of the Celiac Disease Foundation, a 501(c)(3) non-profit, public benefit corporation, is a training program for runners, walkers and cyclists who participate in races across the United States to raise awareness and funds for Celiac Disease. The money we raise goes directly to research and awareness programs and camp scholarships for Celiac children.
I encourage any of you who want to join us on our run to become Team Gluten Free members. If you can not participate (or even if you can), please donate. Whether it is $10 or $100 it really does make a huge difference helping to pay for camp for celiac kids and other programs. We have a goal to raise $1,000 for the foundation before our race. The race we have decided to run is the 1st annual Modesto midnight half marathon and 2 mile fun run on Saturday, August 8th at the Modesto City Centre Plaza. This is the valleys only midnight summer run (actually starting at 9:00 p.m.) so it will be a nice and cooler. We will all have our kids and strollers and hope as many of you as possible can come.
For more information on Celiac Disease visit http://www.celiac.org/ and for the Team in Training please visit http://www.teamglutenfree.org/
Thank you to all that prayed for Addie as she was going through this difficult time.