A Father’s Story in Honor of Father’s Day

Published on Thu, 08/28/2014

As corny as it sounds, my wife Lauren and I met ten years ago at my best friend's wedding. Upon first meeting her I realized she was one of the most personable and attractive people I'd ever met. We'll be married seven years this fall.

We had a hard time starting a family, so when we learned of Lauren’s pregnancy in 2010 we were thrilled! We were expecting twins; sadly we lost one of the twins at twelve weeks. Lauren had a difficult pregnancy, going into pre-term labor three times. The third time doctors performed an emergency cesarean-section because the baby’s heart rate dropped. Addison was born eight weeks early in November 2010.

When our daughter was born we had no idea that DM affected anyone in our family, let alone that she could possibly have it. Lauren had been told when she was twenty that she had “minor myotonia,” but the doctor never connected it with DM, or even mentioned DM. Lauren had some symptoms - when she squeezed her hand around a jar to open it, her hand would get stuck - but we never thought anything of it.

At birth Addison was extremely floppy, had jaundice and trouble breathing, and a slew of other issues. Although she was in very critical condition and there was a lot going on, we were overcome with joy, as she was the most beautiful and precious girl we'd ever seen. Seeing our tiny little "Cornish hen" (as Lauren called her) hooked up to tubes and machines was heartbreaking, but we just knew she'd be a fighter.

After four days Addison was transferred to St. Christopher’s Hospital for Children in Philadelphia, PA, where the medical team began to dive into our family history. We met with a geneticist and after a couple months the team began to suspect DM might be the answer. Addison and Lauren were both found to be affected by DM.

Addison struggled for life for well over two months. She was put on a ventilator and underwent a surgical procedure that corrects gastroesophageal reflux. After the ventilator she started to progress in the right direction. Lauren and I were exhausted from driving over an hour-and-a-half roundtrip to be with Addison in the hospital each and every day, but the prospects of finally being able to bring her home turned that exhaustion into elation.

After four months she was finally strong enough to come home! We made six trips to the emergency room. We went through surgeries, casts, doctor visits, and therapies upon therapies upon therapies. One could think it was difficult, but it became our normal.

Throughout her life, Addison has shown incredible resilience and grit. At 18 months old she decided she was done with her tracheotomy tube and simply pulled it out herself. Her ENT doctor agreed she didn’t need it any longer and that was that. Two days later, despite the fact that she'd never taken more than a few steps, Addison began to walk. She has incredible determination.

Today Addison is an extremely happy kid. She goes to preschool four days a week and is making friends. She loves watching movies, particularly “Frozen,” “The Lion King,” and “Disney Jr.” We like to watch sports together, and she can sing the Philadelphia Eagles fight song - she makes her dad proud! We try to give her every possible experience. She's been to Phillies games, Eagles games, Busch Gardens, the beach and on an airplane.

These days her biggest struggle is eating. Because she doesn't have the ability to swallow, all her food goes through a feeding tube. She also has trouble with her leg muscles and has undergone numerous surgeries to correct tightness in her Achilles tendons and hamstrings. For now, she wears splints and braces to help her walk.

Some of the best advice we ever got was to treat her like a regular kid. We have done just that, and we believe that’s why she’s become so incredibly strong. Addison is a little rock star. Like her mom, she doesn't let anything get in her way. DM is just another hurdle the two of them have been given to overcome.

We want Addison to have every opportunity in life so Lauren and I decided we needed to do something to further DM research. When we saw Darren Hanson’s Dash & Dine for DM fundraising campaign on Facebook we knew we too could do an athletic fundraising event and the Tri State Tough Mudder was our opportunity. When my nephew Chip found out about our plans for the Tough Mudder, he was the first to say he wanted to help out, so together we've formed Team Addison and we'll be competing and fundraising for DM in October.

We hope there will one day be a cure for DM so that Addison and children like her can continue to enjoy and experience everything their little hearts' desire.