Super Esmé

"I also know that my daughter is absolutely a superhero. I believe she has saved me many many times over. I know that I would think my child was special no matter what her health status. But because of/despite/along with her medical issues comes a tremendous joy that her body seems, at times, incapable of containing, an unspeakable bravery, a solemn understanding, a drive to live, and a need to connect that is all beyond heroic." 

- Super Esmé's Mom

Super Esmé

New York

Today begins Feeding Tube Awareness Week - a particularly special week for TinySuperheroes since 5 out of 6 of our first featured TinySuperheroes rely on their feeding tube for nourishment.  And as we now introduce you to Super Esmé, we have a sixth Tubie TinySuperhero! Super Esmé is the perfect advocate for Feeding Tube Awareness Week, and we're so happy to feature her as our newest Extraordinary TinySuperhero!

Esmé was born with The Cute Syndrome. Ok, so The Cute Syndrome isn't actually an official medical diagnosis, but it indeed perfectly describes the symptoms of Esmé's undiagnosed genetic condition.

At their 20 week ultrasound, Esmé's parents received the news that their perfect baby seemed to have a genetic disorder; however, the doctors weren't sure of the nature of her condition. Fast forward two years, and the doctors still aren't sure. Esmé was born full term, but stayed in the NICU for one week because she wasn't feeding well and had low muscle tone. Esmé went home, but problems arose quickly, and at just 3 1/2 months old, Esmé went into respiratory failure followed by respiratory and cardiac arrest. 

Life, since defying death in the ER that day, has been anything but "normal" for Esmé's family. Her genetic condition is still undiagnosed (The Cute Syndrome), which also means they have no prognosis or idea of what the future holds. Esmé is also fighting severe hypotonia (low muscle tone), developmental delay, severe GERD, feeding difficulties, a minor heart abnormality, and epilepsy. Esmé just celebrated her second birthday, but due to the extremely low muscle tone, she cannot support herself in a sitting position for very long. She is also non-verbal. 

What all of these medical diagnosis (or lack there of) haven't addressed; however, is Esmé's super powers. She has several, but the one she shares publicly is her ability to bring a smile to even the rudest onlooker with her positive spirit. Through tests, procedures, vomiting, hospital stays, and seizures, Esmé's smile is never far away. She may not crawl, walk, sit, or talk...but Esmé smiles and laughs all the time, and causes everyone around her to do the same! It's as if she knows more than us - as if she understands that indeed she is exactly who she is meant to be. Esmé has done an amazing job at teaching her parents, doctors, and now us, the balance of keeping her safe and healthy, while letting Esmé be Esmé:

"Now, it may be the result of having watched every inch of my child's body being measured, evaluated and analyzed, but, meanwhile, it seems that in trying to figure out whether a child will exceed milestones or not, we forget to just let them be who they are. Watch them, hear them...let them teach us a little bit. And if they are a little behind their peers in one thing or another...it will be ok. Really. I don't have much of a choice with my child, because if I tracked such things I would be a blubbering mess...but it is as true for Ezzy as for any other child: They need to just be allowed to be who they are."

So, why is Super Esmé the perfect TinySuperhero to advocate during Feeding Tube Awareness Week (other than the fact that she's nourished through a G Tube)? Esmé is proof that miracles do happen. She has flabbergasted doctors with her strength, progress, and survival. (She is even anxiously awaiting the arrival of a Gait Trainer so that she can be more mobile, and has been practicing on "The Pony", zipping all over the house!) Without a Feeding Tube, Esmé would not survive, and trust me, our world needs Super Esmé! She has empowered her own mother to be an advocate for her and for children like her, who rely on Feeding Tubes in order to serve our world as a TinySuperhero.  Esmé's smile represents hundreds of thousands of other children who rely on Feeding Tubes to survive, including our very own Super Brenna, Super Isaac, Super Case, Super Elijah, and Super Ireland!

You can follow Super Esmé's story on her mom's blog. You can help Esmé spread awareness and learn more about Tube-Fed TinySuperheroes at the Feeding Tube Awareness Foundation (where Esmé's mom volunteers).

In two years, Super Esmé has already made her mark. This Extraordinary TinySuperhero's smile has many miles left, and we're so blessed to have her on our TinySuperhero squad!

"Esmé is certainly not the child I dreamed of, because I was too simple-minded to know that she was exactly the child we needed... She's definitely a superhero...and, to answer my nephew, it would not surprise me one bit if she could fly."

For the month of February we will be donating one TinySuperhero cape to a kid like Super Esmé 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 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. 

Super Brenna

We are so excited to introduce you to our very first featured TinySuperhero:

Super Brenna!  

Illinois

Brenna was truly born a TinySuperhero. On December 19, 2011 Brenna joined the world with a very rare and severe skin disorder called Harlequin Ichthyosis. Currently only about 12 out of 311,591,917 Americans are diagnosed with Harlequin Ichthyosis. Here's how Brenna's mom explains the disorder - "Without the protein that helps the top layer of her skin form like it should, Brenna's skin doesn't do its job right - it doesn't maintain her body temperature, it doesn't hold its moisture and it doesn't keep out bacteria, leaving her very susceptible to infection." 

It wasn't too long ago that Harlequin Ichthyosis was a fatal diagnosis, with most babies only living a few days.  But, Super Brenna just celebrated her first birthday (had an awesome Very Hungry Caterpillar celebration) and with more research, medical advancements, and Brenna's super powers, Brenna will be changing our world for many, many years to come!

Brenna has been displaying her super powers and transforming the lives of people around her every day since she was born.  In one short year she has fought infections, undergone surgeries, stole the hearts of many nurses, and taught many doctors many things they never knew!  

Luckily, one of Brenna's super powers is endurance because the fight against Harlequin Ichthyosis is ongoing.  But while Brenna continues to fight against the complications that skin conditions like this cause, we think that Brenna's truest superhero power is the way that she is changing hearts of people around the world. Brenna is redefining beautiful.  Her skin may look different and she may wear Aquaphor instead of smelly lotions, but one look at her smile will melt your heart! There's no question that Brenna is beautiful inside and out.

Like most amazing Superheroes, Brenna has some rock-star sidekicks.  No doubt that Brenna's perseverance, strength, and willpower have brought her this far, but she's got some mighty hands helping her out!  Brenna's mom, dad, and 3 year old brother Connor have really gone all out for their TinySuperhero!  Harlequin Ichthyosis is tricky because it requires a constant balance of avoiding infection and keeping her skin moist enough to prevent cracking, but dry enough to prevent excess skin growth.  Brenna's skin grows at about 10x the rate of normal skin.  Brenna's sidekicks are committed to treating and preventing excessive skin growth and infection 24/7. Oh, and her brother Connor is sure to teach her all there is to know about Lightning McQueen.

 

We are thrilled to introduce you to Super Brenna, but her story reaches depths far beyond this intro. I encourage you to follow her mom's blog and learn more about Brenna and Harlequin Ichthyosis : Blessed By Brenna.  We are inspired by Brenna's family daily and truly thank them for sharing their story.

I think Brenna's TinySuperhero status is captured in this quote from her mom:

"Because of Brenna, we have learned how to love more deeply and to savor every little moment with our babies. We are truly blessed...by each other, by Connor
and by Brenna, whose addition to our family has brought a stronger love and deeper appreciation for life than we could have ever imagined."

For the month of February we will be donating one TinySuperhero cape to a kid like Super Brenna 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.