This weekend, I have the awesome opportunity to travel to NYC with some fellow Menkes Moms (MMs). These ladies and I have become very close over the last few years, and it’s all (well mostly) due to Menkes.
Besides the killer plans we’ve got in store, I wanted to share a little about this fabulous bunch.
That beauty on the far left is our fearless leader…and that should not be taken as a cliche’. Jamie Eckman is the president of The Menkes Foundation. She’s fearless. And she’s badass. Jamie’s been spreading love, hope and awareness about this horrible disease since the passing of her beloved son Wesley, whom she calls her soulmate.
Jamie and her husband Drew started the foundation that has done so much for so many boys and their families. I found Jamie through their website when Ben was about two. Until then we avoided Menkes on the Internet like the plague. But when Ben was stable, I started searching and found this beautiful lady and her foundation. Dave and I hosted four golf tournaments to raise money for their foundation. And over the years we have become very close. It just so happens that Jamie and Drew live in Maryland too.
Next to Jamie in the picture is Heidi Berlin. Now this you’re not going to believe. So get ready. Heidi and I were friends BEFORE Menkes. Before kids. Before marriage. Before I even knew Dave…I knew Heidi…who married Dan…who went to high school with Dave. Did you get all that? My Dave knew her Dan from high school, and I knew her Dan’s friends in college. So I knew Heidi. Keeping up? After post-college days of parties and football games, we each got married and had blonde haired, blue-eyed handsome devils-of-sons (one month apart, I might add).
If you know my story, you know that we were warned about a Menkes diagnosis when Ben was three days old. It wasn’t until Heidi’s Adam was one year (and one day) old when Menkes began to rule their world. Heidi and I were in close contact after that and I’m so thankful for her friendship. Heidi, like Jamie, lost her precious Adam in January of 2014 at almost six and a half years old. All of us could learn a LOT from Heidi. She likes to say, when she gets the dreaded, “You’re so strong!” that “LOVE is Strong.” I love that. And I love Heidi. Heidi and Dan also live in Maryland.
The last lady I’m so thankful to know in that first picture above is Allison Delano. Allison does NOT live in Maryland. 🙂 She lives in Atlanta with her husband Bryan and their two kids: John and Reese. John, as you probably guessed, has Menkes, as well. Apparently (and I’m fuzzy on the details), Allison did a fair amount of stalking of Ben and us during their early days of Menkes. I’m so very thankful for Facebook as it brought Allison (and many other MMs to me). Allison is HILARIOUS and sweet and such a good friend to have for such terrible reasons. All of us Menkes Moms are so thankful for each other, but we really wish we’d never met because that would mean we would never have had to look for others suffering like us.
During a summer visit of these three fabulous ladies and I, we decided we needed a girl’s trip to laugh and love and live in honor of boys. We decided November, Menkes Awareness Month, would be the perfect time to visit New York City. The details came together quite quickly and all-of-sudden, the trip is here! And I can’t wait to share our plans with you!
This Friday, the other two MD gals and I will take the train to meet Mrs. ATL in NYC. Our first item on the agenda (after some lunch and cocktails, of course) is to see The Tonight Show and laugh with Mr. Jimmy Fallon, himself!!! We are SO EXCITED!! Next up after that is to be a part of the Today Show crowd and spread a little Menkes LOVE! Hopefully you’ll be able to see us, if you care to, in our Menkes Blue and Copper shirts and signs! We’re also going to do a little shopping, a little eating and drinking, and a LOT of laughing. Probably a fair amount of tears, too, as we come together to share a bond that is so special and unique and full of emotion.
So set your DVRs, people: Four Menkes Moms Take On NEW YORK CITY! This weekend. Brought to you by NBC and The Menkes Foundation. 😉 Hehe.