Some of you may have seen my Facebook post about Ella's sweet friend Ellie, who passed away unexpectedly last Sunday. We have been broken hearted this week as we remember this little girl, pray for her wonderful family, and struggle with the 'whys' of this situation. Ellie had a dual diagnosis of CdLS and a rare genetic disorder called Trisomy 4p. Ellie's mom first emailed me a few months ago to tell me she had found my blog after googling 'CdLS' when her doctors first brought it up as a possible diagnosis for Ellie. She wanted to thank me for writing it and tell me how it had helped her through some hard times. We connected over Facebook and our blogs and as I learned more about their family, I was soon humbled that she thought I was the inspiring one. A more beautiful, strong and faith-filled family I am sure exists nowhere. I have loved following Ellie's journey and was overjoyed when Ellie's family moved across the country just to be neighbors with us! Okay.. maybe they live 2 hours away, and possibly it was moreso because her dad got a job there than it was to be closer to our family, but still.
About a month and a half ago there was a CdLS family gathering in Lincoln. We packed up the kiddos and headed south, spending the day connecting with other CdLS families, swapping stories and sharing laughs. To our delight, Ellie and her mom were able to come as well and we got to meet them for the first time face to face, although they are some of those people that we already felt like we had known our entire lives.. What a fun experience it was to finally meet someone who had previously only heard of us through the blog. What a humbling thought that I've always said if I can impact just one person's life with our story, then it was all worth it. What a joy to actually meet one of those people. We had a fun afternoon chatting and visiting and making plans to get together with the whole family soon. Little did we know we wouldn't have that opportunity this side of Heaven.
Here is a part of Ellie's story:
Sometimes people are afraid to ask, and sometimes people do ask what Ella's future looks like. How long do people with CdLS live? What's the life expectancy? Well, while the literature would tell you that the life expectancy for someone with CdLS technically isn't any shorter than anyone else, and there are those that go on to live well into adulthood, I know from personal experience that there are many many kiddos we lose far too soon. There are a host of complications that just 'could' go wrong with our kids. I grieve every time I hear of another CdLS child gaining their angel wings but this one hits a little closer to home.
Ellie LOVED bubbles, so this afternoon we are spending some time together, blowing bubbles in her honor. No one knows how many days we or our loved ones have on this earth. We don't know when it might be our last day, genetic syndrome or not. And we definitely can't spend every day worrying about what could happen. But today we are making the most of the time we do have with each other. Spending time together, loving each other, serving each other, and blowing bubbles for Ellie.
If you want to help this family with the unexpected funeral costs and medical expenses there is a great fundraiser going on right now at
There are so many awesome raffle items for local (Utah) and non local people and a way to pay through paypal. All the proceeds will go to this amazing family.