I am SO GRATEFUL to every single person who has asked me this question!! You are all so wonderful!! We are incredibly blessed to be a part of this community that is rallying together to end the death sentence of a rare disease. I hope you all know how monumental this will be when we get to the finish line! What a DAY it will be for a doctor who, instead of having to tell a mother that there's nothing they can do to stop their child from dying, gets to say for the first time,

Who knew there were such things as Halloween miracles??? For those of you who don't watch our weekly "Story Time with Damian" Instagram Live update, I'll start at the beginning (if you don't need the download, skip ahead to the header "The BIG News!!!" by CLICKING HERE). Damian needs 2 treatments to survive this disease. One of them is already created but only available under what is called a "Compassionate Access" program, since it is a fairly new product and not yet FDA app

Damian's first physical therapy session this week started off with a big surprise! A couple weeks ago, an equipment vendor representative came to a physical therapy session to go over a bunch of equipment options. He said that the chair that I really wanted for Damian was usually not covered by insurance, and I was disappointed because his suggested alternative didn't seem nearly as versatile. I was so touched when I found out later that through the kindness of the people at

We'd anticipated this trip since the week we got Damian's diagnosis. First of all, I want to make it very clear that not one penny of funds raised from the #SaveDamian campaign was spent on this trip. While this trip was very important and a part of our journey towards treatment, it was not treatment in and of itself. Treatment of ASMD is what we're raising money for. CLICK HERE TO GO TO THE GOFUNDME CAMPAIGN Why NYC? When Damian was diagnosed, I was quickly directed (by lite

This last week I felt like I was "quivering with emotions" - is that a phrase? I just mean that I was (and still seem to be) shifting from strong emotion to strong emotion really quickly: Hope, Fear, Anger, Gratitude, Defiance, Discouragement, Determination, Humility, Sadness... they all just zip through my head one after the other within seconds. Literally "feeling all the feels" over here... We had a lot going on last week - a lot of really encouraging moments, but also som

2020 was the year most people would never repeat, but for us, January 2021 was when all of the crazy started. Up until that point, we thought Damian was normal. Sure, he had heavy vomiting issues ever since he was born. But doctors insisted he was a "happy spitter" and that he would grow out of it. His development, across the board, was growing increasingly more delayed - but he would show so much determination some days to move that I was sure it was only a matter of time be

I am so grateful this morning. In the first 48 hours of our campaign launch, you have helped me raise over $45,000. Not only that, but my Facebook and Instagram have exploded with notifications of people sharing Damian's story with friends and family and coworkers. I'm very quickly becoming unable to respond to every message or personally thank everyone for sharing our story, but PLEASE know that I see you and cannot thank you enough! People are wonderful. And you are my favo

"Please God, make him a fighter." There have been a handful of times I have prayed over my son with this specific request – from the time I found out I was over 2 months pregnant after having just gone on every ride at Disneyland the day prior, to months after he was born and I was in thick of a very real postpartum depression. But after all the times I prayed for Damian to have the strength and determination to get through a struggle I felt I was responsible for, I could nev