Super Chloe

Super Chloe in a pink bow

In April, the astonishing Super Chloe turned one year old. Although she is young, this hero has already shown off some extraordinary superpowers. Let’s take a look at her journey so far.

“Super Chloe was born with breathing problems at 35 weeks,” says Super Parent Sarah. “She had to be on oxygen. She wasn’t able to eat by mouth. A sleep study showed that Super Chloe’s airways were 90 percent blocked. In order to look at her airways and do a mandibular distraction which would lengthen her jaw, Super Chloe had to be sedated and paralyzed for 35 days. Then, right before we were going to be discharged, Super Chloe’s head started to swell, and they found that she had hydrocephalus.”

Super Chloe’s diagnoses also include 17p microduplication syndrome, 7p deletion syndrome, colpocephaly, and Pierre Robin syndrome.

“There are not many children that share Super Chloe’s diagnosis,” says Sarah, “so we do not know what to expect. Genetics have seen the 17 duplications and the -7 deletion, but they have not seen the combination of both, so they are unsure of what to expect and unsure of what Super Chloe will and will not be able to deal with. But Super Chloe is her own boss! She makes up her own rules as we go, so every day is a new journey.”

Some of those journeys have taken Super Chloe to new heights. She has accomplished so much despite the challenges she has faced!

Says Sarah, “Super Chloe is so extraordinary to me because she has been through and came out of so much. She’s one tough little girl. It seems like every time Super Chloe would go down for a procedure, she would come out of recovery and out of sedation always happy and smiling. 

“And she’s a fighter! For instance, it took 3 swallow studies for her to be able to have a bottle, but finally she passed. It’s still challenging for her to drink one, but she has gone from drinking 5 milliliters to now drinking 20 milliliters!”

Other highlights of Super Chloe’s awe-inspiring journey include moments when she has proven that, even though she has had to fight many battles, there is still so much that this superhero loves.

“Super Chloe loves books,” says Sarah, “She loves music. She loves to be sung to. She even likes the music from Wheel of Fortune and the KWQC news! And she loves hearing mommy and daddy’s voices when she is finished with a procedure. It means she knows that we are there.”

Amazing, Super Chloe! Your journey so far has been inspiring. We can’t wait to see what this TinySuperhero does in the year ahead!

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