TEAM CELIAC SISTERS
We're fundraising on behalf of Boston Children's Hospital because on January 31, 2018 our lives changed forever!
January 31, 2018 was the day we received a call from the school that our then 6 year old daughter (Julia) passed out at school and was unresponsive for a short time. She was taken by ambulance to the hospital and as my husband and I raced to get to her we played every scenario through our minds but never could of imagined what the next 15 months would bring.
Leading up to Julia fainting for the first time, she spent over two years having bone pain which our pediatrician diagnosed as "growing pains". She had a limited appetite, her stomach was growing and as the months went by last year more symptoms came about. Julia began to have raised bumps all over her legs and moving up to her stomach area. Following several tests and passing out on 6 more occasions Julia was diagnosed with Celiac Disease in July 2018.
Once she was diagnosed we were referred to the GI Department at Boston Children's Hospital. We quickly understood why this hospital is Ranked #1 in the world from the amazing doctors to the family services they offer. Since Julia was diagnosed that meant our other daughter Grace (10 years old at the time) also had to go in for an endoscopy to rule out the disease. Although Grace was not symptomatic like Julia, she was "as sick" with the disease on the inside and was diagnosed with Celiac Disease a month after her sister.
Now it was September 2018 and although you never want to hear your child has an autoimmune disease (or in our case both of our daughters) we were grateful that we had answers, we were moving to getting them both healthy, and we knew we lived 40 miles from the best hospital in the world! We met with doctors, social workers and nutritionists to assist us in changing our kitchen/home to be safe. We were also learning about contamination and how to communicate this misunderstood disease to our family and friends but as we were moving forward and educating ourselves, Julia continued to have alot of bone pain.
Looking for the good, Julia and Grace were both healing. Grace's healing we couldn't see but we watched Julia's dermatitis herpetiformis which was now over much of her body begin to disappear once we took all the contamination out of her diet and had her living in a "gluten free" environment. We watched her descended stomach go back to normal and the night sweats cease. With all the positive healing in the back of our minds, Steve and I continued to worry! We were still getting the heating pad 3-4 nights a week for Julia and now her bone pain began moving more to her spine, arms and neck along with her legs.
Christmas 2018, Julia's pain was becoming more regular and we now had difference heating pads going to try and go on her legs, neck and spine. She had already been seen by GI, Cardiology, Neurology and Genetics and Ehlers Danlos (a rare genetic disease) came up several times but once she was diagnosed with celiac that word took a "back burner". In February this year 2019, it was confirmed by our GI doctor that Julia's pain didn't have anything to do with her celiac disease. We were referred to rheumatology as our doctor said there was something more going on in her case.
Following further testing and finding Julia having excessive hypermobility, we began physical therapy to try and give that mobility more "stability" in hopes to minimize her pain. Two weeks after beginning physical therapy Julia had another event at school with pain in her chest and we were sent back to cardiology. It was time to do an echocardiogram.
In March, we learned that Julia has a dilated aorta (enlarged heart)and has vascular issues affecting her heart rate/blood flow leading to her total 9 vasovagal syncopies. Besides her celiac disease she is now being closely monitored for a rare genetic disorder where we have been referred to the cardiac genetics team at Boston Children's Hospital. We will have an appointment in May to learn the game plan and next round of testing for Julia. In the meantime, we are keeping life as normal as possible going one day at a time. The "not knowing" is difficult but we are lucky to have such a wonderful family, friends and this amazing hospital as part of our army of support and getting closer to answers.
Both of our little girls will be treated and monitored by Boston Children's Hospital until they are 18 years old. In Julia's case having more "rare" symptoms and diagnosis thus far, the latest research can make all the difference. Please consider joining our team or making a donation for this amazing hospital to continue to find cures and help every child feel well. This will be an annual event for our family where we hope to make a small difference.