Monday, November 9, 2015

Stella & Dot Fundraiser to benefit the Cohen Syndrome Association

Nearly two years ago, on November 21, 2013, after a year and a half of continual concerns, Dr.'s appointments, testing, and initial therapies, we received Clara's diagnosis of Cohen Syndrome. We sat in the geneticists office that November day with eyes popped wide and minds on the brink of explosion. 

So much information. 

So many questions.

So many "What if's?"

So many "She many never _____. . . "

Pictures from the day of her diagnosis, November 21, 2013
(I was almost 8 months pregnant with Camille!)

That hour and a half at the children's hospital felt like a lifetime. Guilt filled our hearts as we learned that our daughter's struggles were a direct result of mom and dad passing on faulty genes. Emotions swayed from "Goodness, this is just too much," to "Okay, we can do this . . . we've got this!" 

And all of the emotions felt on that day, two years ago, still creep back inside from time to time. Special needs parenting is filled with lots of hard and lots of good. But that is just the nature of parenting . . . lots of hard and lots of good, regardless of diagnostic label.  

Cohen Syndrome is a rare genetic disorder caused by mutations in the VPS13B gene (frequently called the COH1 gene). We are so thankful to have an answer for all of Clara's struggles. 

Anyone that knows her knows that while her struggles are many, her joy is even greater! She is one amazing kid. We are so thankful for Clara and the love and life she brings to everyone who crosses her path. We believe God is going to use her, rare genetic condition and all, to change the world in her own little way. And that really isn't little at all, is it?

Clara 2014, with her little sister

Some of you might remember that last November we partnered with Chickfila to raise funds for the Cohen Syndrome Association (CSA), in honor of Clara (and her adorable friend, Katherine, also diagnosed with Cohen Syndrome).  We are thrilled to host another fundraiser this year, just in time for the two year anniversary of Clara's diagnosis. 

On Sunday November 22nd at 8:30pm we will be hosting a live fundraiser on Facebook. Our friend and Stella & Dot representitive, Gillian Mathews, has so generously agreed to give 50% of all sales to the CSA. Fifty percent!! This is a great opportunity to do a little holiday shopping while also giving to a great cause. 

If you are on Facebook and would like an invite to the live event, please let me know! For those of you who might not be able to participate in the live event, the link is up and ready now for shoppers (See below)! Feel free to browse around and shop at your convenience. 

Our goal in this annual fundraiser is to raise awareness, continue the conversation of special needs, and raise funds for the CSA. The CSA was founded by parents to raise awareness of this disease with the goal of educating parents and professionals to assure earlier diagnosis and medical interventions. We really cannot stress what a game changer it is when families receive an early diagnosis. 

For more specific information on Cohen Syndrome please visit

For more information on the CSA please visit

Clara and mommy, 2015
Thank you so much for your generosity and support for not only our family, but the greater special needs community! We appreciate your love and prayers so very much.

Happy shopping!


  1. Love that you do something like this each year and I'm thankful for the opportunity to participate!

  2. I love that y'all are doing this - here's hoping it goes as well as last year's event!


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