It was about three and a half years ago when we found out that our son Jack has celiac disease. I had a feeling that something was not right and requested his pediatrician do blood work. It was not a typical situation. Other than short stature, Jack had no symptoms at all.

I was amazed at how easily he adapted to being gluten-free and we were proud of his fortitude in maintaining a gluten-free diet. Not an easy task for any 11 year old boy.

Shortly after his diagnosis, Jack and I were at my cousin’s house and she told us about her amazing friend Alice Bast, the President of the National Foundation for Celiac Awareness (NFCA). After hearing about Alice’s accomplishments and the magnitude of what she has done for celiac awareness, Jack wrote her a note and asked my cousin to deliver it. I think the note told Alice that she was a hero. Indeed she is! We looked forward to meeting her one day.

Jack’s letter to Alice Bast

The months and years following Jack’s diagnosis progressively became a nightmare. Jack developed extreme anxiety, he became depressed and his behavior was frequently alarming. His emotions were rampant and we often needed professional assistance in our home. We visited many hospitals, psychologists, psychiatrists, counselors and therapists. We were given a barrage of different diagnoses and feared that we would soon be unable to care for Jack at home. School gave him his own aid, his own bus and pulled him out of all mainstream classes. Although academically he maintained excellent grades, we were told that he would be unable to attend the high school do to the enormity of his emotional difficulties. We were consumed and worried beyond belief. It took a major toll on his brothers, his father and I were frantic, Jack was devastated. He slowly lost all of his friends, dropped out of his favorite sports and refused to socialize with his peers.

During this horrific time Jack participated in a fundraiser for NFCA and won a competition! Alice invited Jack to Washington, DC two years in a row. There, he spoke to lawmakers about celiac disease. Twice Jack helped me procure items for silent auctions for annual VIP fundraisers which benefit NFCA. He was even invited to do a news broadcast on public television with Alice. During such a devastating time in his life, Jack was our little NFCA superstar.

Jack just finished 8th grade and the last three months made improvements so drastic that he has been invited to attend the high school. Although he still has some hurdles to surpass, he is making new friends, just joined his old hockey team and is having a terrific summer.

I truly believe that other than the unconditional love of his family, NFCA was the only thing in Jack’s life that he felt was positive. For Jack, celiac disease was a God-send; it afforded us the opportunity to meet Alice and her dynamic team. In his time of need, NFCA wrapped its arms around our son with support and kindness that we will never forget.

Cheryl Lynne Simpson
NFCA Supporter, Friend and Volunteer