Little Joe's Story 

This Mother’s Day, I am writing to tell you about my amazing wife.  I also want to commend Starlight -- an organization that helps thousands of families like ours as we cope with serious illness, separation, fear and isolation.  Nobody should have to deal with a child's serious illness alone and that's why we're grateful that Starlight is there for families when we need them most. Our story has a happy ending and I give my wife a lot of credit for helping all of us get through the tough times.

I chose Mother’s Day as the most fitting time to tell this story because my wife, Liz, is the most courageous and amazing mother I know - and because she is the mother of my three beautiful children.

My name is Joe, also known as “Big Joe” by my family and friends. I’m in the Army and have served most of the last seven years in Iraq and South Korea.

I was deployed to Iraq when my wife was 6 months pregnant with our first child. When “Little Joe” was born on July 7, 2003, I wasn’t able to come home but that didn’t stop us from celebrating his birth together by phone and through the Internet.

Our joy quickly turned to concern over the next few weeks when Little Joe became very sick. Liz kept taking him to the doctor, but each time they assured her that he was fine, saying that her “new mom stress” and my deployment were causing her undue anxiety. But weeks passed, and Joe began to lose a lot of weight.  At 6 weeks old he had dropped from 11 pounds to only 8 pounds.  It was clear something was very wrong and so our tiny baby was admitted to the hospital.

I came home on emergency leave in November of 2003 for one of Little Joe's surgeries and was able to stay for 2 weeks with my wife in the Ronald McDonald house. 

This was the first time I met my son. He was already four months old and yet I could see that like his mommy, he was a fighter.  Liz and Little Joe would spend much of the next 2 1/2 years at the hospital, including 17 months of inpatient time. 

Little Joe had severe gastrointestinal problems, but the source of those problems was still undetermined. He endured many surgeries and the installation of a feeding tube. While my wife was scared and oftentimes alone, the hospital staff and our Army family remained a huge comfort for her.

Little Joe continued to fight.  Finally, after months of fear and anxiety, we discovered Joe had gastrointestinal eosinophilia, a disease where his body attacks "foreign" bodies which includes most foods.  Grateful we had an answer, we finally we got Little Joe stable enough to attend preschool.

Eventually, he began to spend more time at home instead of the hospital.

Today, Little Joe is 7 years old and has a little brother and sister.  He is still fed a prescription formula through a GJ tube and has to take six different medications every day.  Normal social functions like birthday celebrations, church potlucks and parties at school are especially difficult since so many revolve around food. But no matter what, Joe keeps smiling! He is an outgoing and caring little boy. 

We pray some day there will be a cure for his condition, but can’t be sure what the future holds for him.  We know it’s likely that he will need more surgery and medical procedures if he becomes unable to tolerate even the prescription formula. 

My wife has never been one to ask “why us?” While I was deployed, she held our family together and fought to get Little Joe the care he needed.

Liz is the heart of this family. I am awed by her courage and determination.

I work in the Armor branch of the Army, meaning I work with tanks. Tanks are behemoth and meant to withstand front line combat. I know firsthand what strength means. On the battlefield even the toughest soldiers get scared at times.  And in the battle to save our son’s life, my wife stood down her fear and anxiety and dealt with every challenge that came her way.  Thousands of miles away, all I could do was reassure her that she wasn’t really alone.  To me, my wife exemplifies the strength, grace and love that defines “mom.” 

Liz often shares our story so that other families in similar situations can find courage and hope in our shared experiences. Starlighhelps families like ours find support every day as we struggle to deal with the serious illness of a child. Starlight understands how important it is for families like ours to know that we are not alone.

I hope that you might consider supporting Starlight today in honor of Little Joe’s mommy, and all the mothers, fathers and unsung heroes who hold their families together in the face of serious illness. Maybe you’d like to pay tribute to your own mother or another mother who has touched your life in a meaningful way.

I can tell you that having an organization like Starlight makes a world of difference for families like mine.  When times are tough, it is truly comforting to know you are not alone. 

Please do what you can to help.

Sincerely,
Big Joe

P.S. If you like, Starlight will send a special tribute letter to the mom you’d like to honor with a gift. I can’t think of a nicer way to say thank you to the strong, courageous women in our lives.