The Cute Syndrome Annual Cocktail Party | Events & Life
Esmé is a real life superhero who’s powers include; bendability, perseverance and cuteness of course. Hillary, a supperhero in her own right, is Esmé’s Mom and Founder of The Cute Syndrome. Hillary shares a great story of how the “cute came to be”: “When Esmé was born in January 2011, it was clear to the doctors that she likely had some form of genetic syndrome. At first we didn’t tell many people or investigate the cause–we wanted people get to know Esmé just as a person, not a diagnosis. When Esmé was about a week old, we told our friend Dana that Esmé’s doctors thought she had a syndrome. Dana looked down at Esmé and said, “Yeah, Esmé has a syndrome: The Cute Syndrome.”
Esmé and her family have been through quite the journey as she has several severe medical challenges including epilepsy, severe GERD, severe hypotonia and developmental delays. One of the most difficult challenges has been that for the longest time there was no diagnosis for Esmé – and how can you treat something when you don’t know what that something is? This little lady has spent hours being tested and while we still don’t have a full picture she was given a partial diagnosis of the very rare disorder PCDH19 Epilepsy.
Since day one Hillary has been a fierce advocate of her Daughter and with so little known about PCDH19 she decided to take matters into her own hands. While I am fully confident that Hillary would make an excellent medical doctor (she already has her PhD) and would undoubtedly find an effective treatment or cure, she found a more effective way to bring awareness and research options for treatment of PCDH19 Epilepsy. As a result, she founded The Cute Syndrome which raises money to fund research, search for treatment and raise awareness about rare genetic disorders relating to epilepsy, hypotonia, and developmental delays like PCDH19 Epilepsy.
This work is critical to all of the children who are affected by these rare disorders. The Cute Syndrome raised more than $100,000.00 in the past 16 months and TCS has funded two medical research grants. One at Boston children’s and the other at the CNR institute of neuroscience.
Here Esmé is very curious about everything and here she was so excited to take hold of Mom’s jewelry. I just love her little determined face!
Due to her low muscle tone, this little lady is also quite the contortionist, and it is only natural that she gets the pet name of “Monkey” She is always flipping to see the world in a different way and I think that is the same gift that she gives others – Perspective.
We had the most spectacular day for The Cute Syndrome’s Annual Cocktail Party.
If you pop over to TCS website
you can read all about the story of Esmé and her Giraffes. They also happen to be the iconic pattern for The Cute Syndrome.
At this event we had the most spectacular spread of local nibbles from Spoonful Kitchen & Catering
and some homemade favorites from Hillary’s family.
I just love this little moment between Hillary and Esmé.
The Farm location for this Event was gorgeous, from the roaming chickens to the potting shed that held all of the silent auction items, it was picture perfect.
Here Hillary and Phil deliver the news from the The Cute Syndrome’s Annual Report. In just their first year they raised over $80,000.00 for research (and now $100,000 in the first 16 months)!
Guests and supporters enjoyed the beautiful sunshine and perfect gardens.