We’re Thinking of all of you

It’s just a few minutes into Christmas Day in Portland, Oregon USA as I write this. Mannheim Steamroller is playing in the background but all I keep hearing in my head is Let It Be Christmas by Alan Jackson. That album and the featured song were recorded in 2002, so they’re not new, but this year it is really sticking with me.

Christmas is supposed to be a time of family, smile, and great joy. But we all know that for MLD and other rare disease families we often approach Christmas with very mixed emotions.

We just passed Darcee’s 26th heaven going day and it is as if it happened yesterday. On the other end of the age spectrum (and in the “proper” sequence of parent before child – but no easier), I lost my mother earlier this year. And of course, Lindy, who we are blessed to celebrate another Christmas with, is counting down her Christmas’s.

Every MLD child or adult is special to us. We lost a quite a few of you this year … to your parents and loved ones we send special hugs.

For those of you elsewhere on the MLD journey we send hugs as well.

And for the precious few that have been able to access life saving therapies we celebrate and wish you the best in 2022.

To all of you we send our love and prayers for good day, a good year, and wishes for friends and family to hold you close. The MLD Family™ is very personal and special to us.

Listen to Let It Be Christmas … may it encourage you and those around you.

And look for MLD by the Numbers later this week as we reflect on the “business” of MLD, but for today we focus on you, the MLD Family – the people of MLD.