A Father's Story of Love

In August of 2000, Jey and Lori Miles lost their daughter Megan to Krabbe Disease. In June of 2003, they welcomed their second child into the world, a boy they named Degan. Because of Megan, the Miles’ knew to test their son for the same disease. He, too, had Krabbe. Degan was blessed with an early diagnosis though, which enabled him to undergo a lifesaving newborn cord blood transplant, all thanks to his sister. Below, Jey, Megan and Degan’s dad, shares his story:

Yesterday, my wife, Lori, came telling me of a sixteen-year-old girl who is currently looking into her options for her Krabbe baby. My heart sank. This is how I grew up. I was sixteen when Lori came into my life - she was twenty. To make a real long story short I fell in love with her and within six months I moved in. Shortly after I turned eighteen, Megan was born. If there was anything in this world that could open a happy-go-lucky eighteen-year-old’s eyes to harsh reality, Megan being diagnosed with Krabbe Disease was it. Through talking with other Krabbe families, I’ve come to know how much we all learn to value every second, every breath our children take. Megan taught me almost everything that formed me into the man I am.

I never knew my father until after Megan was sick. My mom remarried when I was young so I always had a Dad, and this enabled me to see, experience, and be everything my father missed out on. So in a way, I thank my father for leaving. That was my source of determination. Within moments of Megan’s birth, I swore to her I would never leave her side, she would always be mine and I hers. Little did I know what those words would come to mean.

I’ve been asked what it was that Megan taught me, and I seldom give more than a reply of “everything that means anything.” What a simple answer for such a complex question. If you wanted specifics I would let you know that I am a man and no longer a boy, because of her. Remembering our time together provides me strength to this day. Through our trials and tribulations, I’ve learned, as long as you will yourself to stand, you will not fall. I have grown to know the value of family and true friends. If you should fall, they will lift you to your feet. Megan showed me day-to-day problems are like small streams to jump over, not mad raging rivers. She taught me not to just survive, but to thrive amidst despair and challenging times, and to always pursue happiness. She showed me how blessed I am to have Lori as my wife, as she too has shown me the way at many things. My children could never ask for a better mom. Through our time, I learned how to grieve, to cry, how to let go and how to say goodbye. Now I know how to hold a spirit and a memory in my heart. I know how to mend a broken heart. I can love unconditionally through whatever pain it causes. I know when to be proud and when to swallow my pride.

I can’t believe my baby girl has been gone for three years. Two of those years have been spent hiding from this hellish disease. It has been a year now since we decided to face our fears and try for another baby. I could compare the chapter in our lives called “Megan” to falling off a cliff, surviving, and crawling to the top of the next hill. Having Degan has been more of a roller coaster ride. Finding out we’re pregnant - our first trip to the top. A gradual decent with fear and anticipation set in while waiting to have prenatal testing. When the results came back it was a straight shot to the top of cloud nine - a healthy baby boy! Lori asked “even the Krabbe?” and the lady said, “yes, your baby is fine”. What a feeling! It was quite possibly the happiest week of my life. Then the phone rang. Lori’s primary doctor was on the line telling us Degan has Krabbe. The man who drew Lori’s amniotic fluid had a co-worker call and give us “the good news” before Dr. Wenger even had sent back the results. Only the standard screenings in Denver were complete. Oh, now I was out for blood! Our ride now, went from the top straight to the bottom, onto twists and loops and finally turns; turns that let go of my anger and focused on what mattered - my son. Now, our ride wasn’t over, and the planning and effort it took to get us to North Carolina and Dr K. just about made us lose our lunch! A roller coaster’s destination always takes you right back to where you began so I suppose my comparison is a bit inaccurate. Life will never return to its previous state, which was incomplete.

We bought a house and made a home, even got a puppy and made a new best friend. The missing link was still felt. Our house still seemed empty. So we’ve taken a leap of faith to make our lives complete. We’ve missed being parents so much. It feels great to be back in the saddle again. Degan has had a picture perfect transplant thus far and that is definitely a blessing. We are sixty days post transplant today and Degan is almost 3 months old. He is smiling and cooing - loving life.

I’ve heard of people who don’t understand how we could do this. I’m not sure if they think it’s wrong or just too difficult to face again. Whatever their reason, it doesn’t matter. They don’t understand. They never could. If I were to lose everything I’ve worked for except Degan because of this, it would be well worth it. He is priceless.

Growing up, believe it or not, the Bills were my favorite team and mainly Jim was my favorite player. It feels strange to have someone you grow up admiring as a player, end up teaching you an honest lesson of life. So I would like to thank Jill and Jim for showing me that I must fight. It’s what you have done off the field that will outlive you Jim - Thank you. I also want to thank Dr. Kurtzberg. Every time I look at her, I see my hero. She too shows me to fight. Last and most of all, I thank Megan for her sacrifice to save her little brother, and Hunter for hope.