Our daughter, Ellie, passed away on June 18th, just 17 days shy of her first birthday, peacefully, in her Mommy's arms, with her Daddy by her side. Ellie suffered from a rare genetic metabolic disorder, called Congenital Disorder of Glycosylation Type 1A (CDG 1A.) CDG 1A is a systemic disease that affects every organ in your body, from your liver, to your, heart, to your brain. About 20% of affected infants do not survive their first year of life – This was the case with our little girl, Ellie.
Currently there is no cure – there has been around 800 known cases across the globe. Currently some research is being done at CHOP, but there is little data to go by.
Our goal here is to raise money for CDG 1A Reseach and build awareness. All contributions are tax deductible – and will go directly to helping with Research for CDG 1A.
Ellie was the most beautiful baby in this world (no really, we're not just saying this because we were her Mommy and Daddy) Her big blue eyes and smile would melt your heart. She was so strong and a fighter until the end. If only all of us could be as strong as our little girl. She held on for as long as she could, but her disorder progressed so quickly, and her little body could not fight anymore.
Anyone who met Ellie knew how special she was – she touched so many people in her short lifetime. When spending nearly half her life at CHOP, she would have visitors every day – just to come in and see her giant bows and elaborate outfits that Mommy would dress her up in (We always told her, just because you’re in the hospital, doesn’t mean you can’t be dressed up!)
CHOP is the best hospital in this entire world – the doctors, the nurses, the counselors, social workers – everyone – they are just the most kind people we have come across – for a while there, they were our family. The way they treated us - there are just no words. They are amazing people. There are days when we miss being there – miss our CHOP family – and miss an opportunity to spend more time with our baby girl.
So many people have asked us, “what can we do to help?” This is it – whatever you can spare, please help us raise money and awareness for CDG 1A – This is a cause that cannot be neglected. When Ellie passed we made a promise that we would do whatever we could do to help find a cure. In addition, We are applying for a 501 c3 – this will be Ellie's own non-profit. We plan on doing fundraisers and all sorts of events to partner up with CHOP and raise money for research.