The Chambers

You are here

Emerson is such a sweet, funny, outgoing, music-loving, dancing queen. She is full of sneaky jokes and has a personality as big as any room she is in. Peppa Pig is her absolute favorite thing and really has brought out the imagination in her. Emerson can make anyone's day better with just one of her giggles.

Here is how Emerson's 22Q story began.
Emerson was born June 15, 2015, my baby B. Yes she is a twin! She was born all of 4lbs. 11oz. and just sweet as could be. Born with the cord wrapped around her neck, that's when we should have known we had a fighter on our hands. The pediatrician at the hospital noticed a murmur but was not concerned because sometimes in such small babies they have tiny holes. Well at our 2 week visit we were referred to a cardiologist, that is where we got the news not only did she have one very large hole, but she also had another smaller hole. We decided on a second opinion and got the same prognosis, that our little Emerson would need Open Heart Surgery. At 2 months old we spent 8 days in the hospital and little Emmy got her heart fixed. From there as she continued to grow we noticed slight development delays, but as she got a little older some became more prominent.

What led to our 22Q findings.
Emerson was a late walker, late talker, had chronic reflux and we could tell she was having some issues with really getting her speech out. Emerson has had an IFSP since around 6 months, because of her heart surgery and they were really trying to help us navigate. We had her hearing tested, she did have a large amount of ear infections. We went to a pediatric ENT that told us to have her adenoids shaved and put tubes in her ears, we got a second opinion. We got a second opinion because I knew, I knew in my gut this was not the answer and that second opinion CHANGED OUR LIVES. The second pediatric ENT took her medical history, looked it over, came in sat down and said I will not do surgery on her because with all her history it really seems as though she may have a genetic disorder called 22Q. She said she didn't know enough nor does her hospital specialize in this type of genetic disorder. She said she couldn't be certain, but we needed to call Children's National and get in with their genetic team ASAP. So we did, the wait was a little over 6 months, they took her blood and a few weeks later we found out Emerson has 22Q.11.2deletion. It was a month before her 3rd birthday. Each story is different and each journey is unique. But it is their uniqueness that makes these stories so beautiful.

We will never let her genetic disorder define her, but we will always choose to fight for the help she needs to succeed in life. Emerson is so smart and full of life and we admire her little soul so much. 22Q is just a little piece of her story.

Latest News

Upcoming Event

Spread the Word