Catching Up With Ireland During Down Syndrome Awareness Month

When we first met Ireland in 2010, she was a bright, happy two year old who had already endured her fair share of medical challenges – a journey that her mom, Shanna, shared in an interview on our website.

Ireland plays outside in her swingIreland was born with long gap esophageal atresia, Trisomy 21, Bicuspid Aortic Valve (which severely limits blood flow through her heart to the rest of her body), and chronic respiratory failure. Since then, she has undergone multiple surgeries and received additional diagnoses, but one thing has never changed – her spunky personality.

In honor of Down Syndrome Awareness Month, we recently caught up with Shanna to hear what Ireland has been up to. Now 10 years old, she has surpassed expectations and loves to go to school and be outside (spending this summer playing in her little pool and the slip and slide) – despite some pretty big challenges over the past few months.

“That extra chromosome must give Ireland super powers because she is doing so many things nobody thought she would ever be able to do,” says Shanna. “She continues to amaze us on a daily basis!”

Tackling New Challenges

At the end of last school year, Ireland started having significant choking and coughing episodes that led to testing in Cincinnati where she had a colon interposition procedure done in 2012. When surgery on her airway didn’t reduce the episodes and additional testing came up empty handed, there still isn’t a definite known cause.

“We do know her colon interposition, or “colophagus” as we like to call it, has changed significantly over the years,” says Shanna. “It very well could be the issue, but reconstructive surgery on her colophagus will be a huge operation.”

While it’s inevitable that she will need the surgery down the road, for now they continue to pray for good days and stay positive.

Surgery Down the Road

Ireland gives her dog a hugAfter returning from Cincinnati, Ireland had an appointment with her orthopedic surgeon in Rochester, where Shanna learned that the growth plate in her right tibia has fused again – something that would seem to cause pain, but at this point Ireland seems pain free and doesn’t have issues walking, so they’re able to hold off on surgery until it becomes necessary.

She will also require back surgery eventually due to the progression of her scoliosis, which is caused by all of the ribs on her right side being fused together. As Ireland grows, her scoliosis will progress and require back surgery, so the surgeon told Shanna that it is a benefit to her back that she tends to grow slowly.

“The only good thing about all of this surgery business is that Ireland loves anesthesia,” laughs Shanna. “Any day Ireland gets “gas” is a good day as far as she’s concerned!”

The Lucky Few

As so many who have a loved one with Down syndrome can share, if you’re blessed enough to have someone in your life with Trisomy 21, you are one of the lucky few. Last year around March 21, which is World Down Syndrome Day, this community captured that honor with #theluckyfew tattoo.

Having such an incredible girl like Ireland in their lives, Shanna got her tattoo last year, and Ireland’s brother and soon-to-be sister-in law got theirs earlier this year too. You can learn more about the movement in this article on Popsugar, and by searching #theluckyfew or #theluckyfewtattoo on Instagram.

We are amazed by Ireland’s progress every single day and are so proud to be a part of her journey. Thanks for sharing some updates with us, Shanna!

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