(TL;DR: pasta is great, but so is saving lives—check out @curemsd
and consider donating on Giving Tuesday.) Another day at home with my little coconut 🥥👶🏻 Today we enjoyed an adventure in pasta making—with lots of encouragement from my cutie, I managed to make a passable pappardelle for the last of the ragú. I enjoyed a bowl, and so did she 😋 albeit with much smaller noodles.
With Thanksgiving just a couple days away, I couldn’t help but spend some of today thinking of all I’m thankful for. My family and the good health they’re in always tops my list, but I am keenly aware that, in many ways, this is just a matter of our excellent luck. Just a few weeks ago, I read the story of a little girl named Willow who has a genetic disease so rare that there is currently no cure. Not only is there no cure, but—before her diagnosis and her mother’s Herculean efforts to raise funds for and push research for a cure—there was no work on developing one for so few children.
One can tell straight away when they see Willow (pictured 4th) that her parents must be so thankful for the light she brings to their lives. But the more I consider little Willow’s fate—to have been born with Multiple Sulfatase Deficiency, a disease that claims its victims before they even turn 10–the more I wish that her parents could simply enjoy a life in which Willow could be guaranteed a future.
She has never spoken; now she cannot even eat. When I ruminate on this, my friends sometimes tell me I should just be thankful that my little girl can do these things, that I should feel happy and satisfied. And, yes, I do feel immense joy sharing a meal with my daughter, but I don’t feel it’s right to do nothing when there’s a chance that kids like Willow might get to enjoy a long lifetime of happy moments like these with their families. Thanks to the efforts of Willow’s mom, Amber, and the United MSD Foundation, clinical trials for a promising treatment could start as early as 2019.
Please check out @curemsd
and consider donating. Let’s give Willow’s parents some extra hope this Thanksgiving 💙 #curemsd #findacure #philanthropy #kids #homecooking #dinner #pasta #momlife #giveback #savethechildren