Super Ireland

"I am only one of the many faces of EA/TEF.

I am only one, with a small voice but great hope.

While there is no cure for EA/TEF, there is hope,

and where there is hope, there are miracles.

I am one of those miracles."

Super (Princess) Ireland

Minnesota

Meet Super Ireland - Super Princess Ireland. The world surely isn't ready for the way this TinySuperhero is going to stir things up!

Super Ireland has been keeping her mom, dad, and two brothers on their toes since her arrival on December 15, 2007. Ireland was born with several medical conditions including:  Down Syndrome, a hole in her heart (atrial septal defect), a missing leaflet in her aortic valve (bicuspid aortic valve), lung disease, and Esophageal Atresia (EA). Ireland was very sick at birth, and was airlifted to the University of Minnesota Children's Hospital. 

Esophageal Atresia may sound familiar from Super Isaac's story. This condition  means that the esophagus ends in a blind pouch, rather than connecting to the stomach, making it impossible for food to make it to the stomach. Super Ireland and Super Isaac share the same form of EA, although Ireland's has been a bit tricky to repair.

Super Ireland's first year was full of surgeries. Right after birth, she had a G Tube placed, so she could receive nourishment.  A few months later, they tried connecting her esophagus, but discovered the gap (or atresia) was too large. They attempted the connection anyways, which later ended in emergency surgery, only to find out that the two pieces of her esophagus had completely broken apart.  By this time, Ireland only had a small bit of upper esophagus left, so she relied on a tube to use for drainage and a trach for breathing. This tube had to be replaced weekly under general anesthesia. In September of 2011, she developed a bronchopulmonary fistula, resulting in a massive pulmonary hemorrhage.  Ireland has terrified doctors and beaten odds many times.  

Finally, in October of 2012, Super Ireland got what her family has waited on for 5 years - a complete esophagus - a colophagus (a mix between esophagus and colon). This is a miracle. This surgery wasn't hiccup-free either, and with each hiccup Super Princess Ireland surprises the doctors with her ability to bounce back! I think Ireland's mom gives us a pretty good idea (and puts into perspective) what a major victory this colophagus is for Ireland's family. They have worked so hard and given so much to celebrate something most of us try hard to avoid:

If EA sounds familiar, it's because Super Isaac has the same condition. In fact, it was Super Isaac who introduced us to this princess because she is his very special lady friend! Medically, Isaac & Ireland share a diagnosis of EA, but as you will see in the photos below, their friendship is bound together by more than a diagnosis.

Princess Ireland's super powers go beyond defying medical odds, rocking an extra chromosome, or having a hole in her heart. Super Ireland is a TinySuperhero because she is a girl full of love. She smiles through surgeries, long stays in the hospital, and among her family at home. She makes the people around her smile! She works incredibly hard in physical therapy, has Super Isaac wrapped around her finger, cuddles a baby like she was born to be a mother, and in everything, she smiles. Ireland is a teacher, a fighter, a lover, and we're honored to call her a TinySuperhero.

This Princess LOVES having new friends on her Facebook Page: Ireland's Journey. There, you can send her love and continue to follow her journey. Ireland has already brought so much joy into the world and has only just begun.

For the month of February we will be donating one TinySuperhero cape to a kid like Super Ireland for every TinySuperhero cape purchased from our online store below. Help us empower these TinySuperheroes by purchasing a cape for your own TinySuperhero!

https://www.zaarly.com/tinysuperheroes/tinysuperhero-cape-one-for-one

TinySuperheroes is a small organization that seeks to empower our little ones — one cape at a time. Proceeds from cape sales enable us to spread the love!  We donate TinySuperhero capes to extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. When you empower your TinySuperhero, you help empower others, too!

To nominate a TinySuperhero, email puddles@tinysuperheroes.com. 

Super Isaac

"If every person could hold just a piece of this boy’s magic the world

would be a much more amazing place!" - Super Isaac's Mom

Super Isaac

Virginia

If there were ever one TinySuperhero to want on your side...Super Isaac is it! This TinySuperhero is a fighter, and nothing can stop him! (I mean, do you see how tough he looks?!)

Isaac was born with Esophageal Atresia (EA). Esophageal Atresia is essentially a birth defect in the esophagus. It develops in utero, early in pregnancy. Typically, the esophagus connects the mouth to the stomach; however in babies with EA, the connection is incomplete. Often the esophagus will either stop, ending in a pouch before reaching the stomach, or lack the connection in the middle. This means that anything that goes into the mouth (saliva, food, etc) doesn't make it to the stomach. There are five forms of EA (differing by the levels of esophageal development) and it is prevalent in about 1 in 3,000 births.

Isaac was born 9 weeks early at just 3lbs 3oz.  His type of EA was such that he had two parts to his esophagus - one coming from the mouth and one from the stomach - without connecting in the middle. They immediately began unsuccessful attempts to connect and repair Isaac's esophagus.  Unfortunately, these initial surgeries led to more complications - vocal cord paralysis, and eventually a tracheotomy.  He spent his first 11 months of life in the ICU.  Isaac's life has been full of surgeries, doctors, second opinions, traveling...  the list is long. Along the way, he and his family have met so many other amazing TinySuperheroes, most notably through their time at the Ronald McDonald House in Minneapolis. Based on the image below - looks like he's made an impact there as well!

Super Isaac just celebrated his 4th birthday!  He was born 2 days before Thanksgiving, and his family has given thanks every day since.  In 4 short years, he has had 21 major surgeries. He has been paralyzed and sedated for 11 weeks while his esophagus was grown for him. They travel monthly from Virginia to Minnesota to have his new esophagus stretched (it tightens due to scar tissue). He has several lung complications, is at constant risk of pnemonia, has a feeding tube, and bad reflux. Yet still, they are thankful. Every day is unpredictable, and his family has embraced the adventure. They have sacrificed so much for their TinySuperhero and when you read their story, you will hear only gratitude from them. His mom shares, "Always appreciate what you have, we have seen the worst things that can ever happen to a person, and because of that we appreciate what we have and know that in the grand scheme things could always be much worse."  (Not surprising that Isaac is a TinySuperhero, since clearly his parents are Superheroes, too!)

While Isaac's life has been full of challenges, his story is one of hope. Isaac smiles - a lot. He is discovering his voice, speaking words, and singing! There is real hope that soon his trach will be removed, and Isaac LOVES his new little gym class! Isaac has never let EA stop him - a super power that we can all learn from. "Isaac is Isaac because of EA – the experiences it has given him (and us) have shaped him into the amazing boy he is."

 

This is just the beginning of Isaac's story. This TinySuperhero has more tricks up his sleeve - no doubt. Continue to watch him thrive and learn more about   Esophageal Atresia here:  www.savingisaac.com.  January is EA Awareness Month, so spread the word!

Oh, and if you're smitten by Super Isaac, wait until you meet his girlfriend!

For the month of February we will be donating one TinySuperhero cape to a kid like Super Isaac for every TinySuperhero cape purchased from our online store below. Help us empower these TinySuperheroes by purchasing a cape for your own TinySuperhero!

https://www.zaarly.com/tinysuperheroes/tinysuperhero-cape-one-for-one

TinySuperheroes is a small organization that seeks to empower our little ones — one cape at a time. Proceeds from cape sales enable us to spread the love!  We donate TinySuperhero capes to extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. When you empower your TinySuperhero, you help empower others, too!

To nominate a TinySuperhero, email puddles@tinysuperheroes.com.