By Ellyn Phillips
Ever since you were born, I have dreamed of escorting you down the aisle on your wedding day. What I didn’t know was that it would take 33 years to occur. It was worth the wait. You have chosen wisely, and you and Elia are a wonderful match. You share the same set of values along with a love of family, a lifelong interest in music, dining only on vegetarian food, an obsession with Harry Potter and many other commonalities.
Sadly, though, you also share the loss of a parent. Losing your dad at such a young age has left an indelible mark on you and I am certain that the long illness Elia’s mom suffered and her death when he was a teenager shaped him too.
You grew up with ALS all around you. I believe, that at one point in your young life, you thought that all Daddies were in wheelchairs. You loved riding the chairlift up to the second floor while sitting on Daddy’s lap. When he died, people actually told me that you would be too young to remember your dad. I knew that was completely wrong.
When I became President of The ALS Association Greater Philadelphia Chapter, you and I shared a room using it as an office and playroom on the third floor of our house. You played on your slide, decorating it with ALS stickers, and amused yourself while I sorted through hundreds of note cards that contained the Chapter members’ names, addresses and phone numbers.
I only had to look at you to be motivated.
As you were growing up, we were fortunate to have Gram and Pa to help us, along with Al, Uncle Gary, Uncle Eric and Aunt Julie and all your cousins, neighbors and friends.
You came with me to Phillies games, picnics, patient outings, plaque donations, the Peter, Paul and Mary concert at Valley Forge Music Fair and, tried not to be upset when, by mistake, your little lawn chairs were sold at the yard sale at our house.
As the years went on you did things on your own to raise funds and awareness for ALS. I was so proud when you spoke at the National Advocacy Conference in Washington. And in Chicago, you formed a walk team with members of your office at pitchfork.com and you continue to donate a back stage VIP pass to the Pitchfork Music Festival to the Chicago ALS Chapter. I look forward to every Mother’s Day and birthday when I receive a notification from our Chapter that you have made a donation on my behalf.
I always thought ALS would be history before you reached your teen years, and then your twenties, and then before you got married. But I was wrong. ALS is still with us. But not for lack of trying. Researchers today, many of whom were getting started in their careers when Daddy was diagnosed, have better tools, more knowledge and a clearer path to understanding this cruel disease.
Now that you are married, I have a different dream. I dream of the day when we will find a treatment and cure for ALS.
May that day come very soon.
Love you always,