Super Angel


Today is a big day for our Extraordinary TinySuperhero squad, because today their reach stretches outside of the United States. This is Súper Angel.  He is from Guatemala, and last week his super powers were renewed and strengthened!

Angel is five years old, and was recently discovered as a TinySuperhero living in the rural Guatemalan Highlands. Angel’s family speaks the native Mayan language of Q’eqchi’ and are farmers in corn and bean fields. When we told Angel that he was a TinySuperhero he was shocked.  Since he lived in such a rural part of the world, he’d never even heard of superheroes before!

Some TinySuperheroes are lucky enough to have awesome Superhero Mentors to help them hone their super powers. The World Pediatric Project (WPP) was this for Angel.  WPP is an amazing organization based out of St. Louis, Missouri and Richmond, Virginia. They send medical teams to the Caribbean and Central America where they provide surgical and diagnostic treatment, develop prevention programs, enhance local healthcare, and organize for children to come to the US to receive the medical care they need. When the World Pediatric Project met Angel, it was clear he was a TinySuperhero in need.

Angel’s life has not been easy. Angel is one of five children in a very warm, loving family.  He was born a twin, but lost his twin sister when they were just 6 weeks old. When Angel was six months old, a tumor began growing near his neck. They did tests in Guatemala but were unable to do provide any treatment or care to stop the tumor’s growth. Over the next four and a half years, the tumor continued to grow into what you’ll see in the photo below. The tumor’s weight made it difficult for Angel to even walk.

About six months ago, the tumor almost took our TinySuperhero’s life when it became infected. Surely Angel’s TinySuperhero sister helped coordinate The World Pediatric Project’s meeting of her brother on Earth just months later. Since the medical care Angel needed wasn’t available in Guatemala, WPP brought Angel and his father to St. Louis, Missouri for surgery at Cardinal Glennon Children’s Hospital.

Just about two weeks ago, Angel received a surgery that will forever change his life. His father waited patiently through the day-long surgery, while his mother was back home anxiously awaiting her son’s return. The surgery was successful, and although Angel suffered an infection after surgery, he is expected to make a full recovery. Talk about life changing!

Imagine the freedom that Super Angel now has to fully use his super powers in our world! While he is certainly lucky to have The World Pediatric Project, we are even luckier to have met this Extraordinary TinySuperhero.  His family and friends were so thrilled to have their Angel back home, and he certainly received a well-deserved TinySuperhero welcome!

Sùper Angel is now back in Guatemala, no doubt using his newly strengthened Super Powers to spread hope and joy through Central America. We feel so blessed to have met him, and we can’t wait to see the new life ahead of him!  He was a little hesitant to wear his TinySuperhero cape because he’s been using his powers for so long without it, but he took it home with him and we hope it comes in handy. Sùper Angel has TinySuperhero friends who have been empowered by the WPP and are helping him protect Central America. We look forward to sharing their stories with you, and encourage you to learn more about the wonderful things WPP is doing for TinySuperheroes like Angel!

Super Evan


Meet Super Evan! His name means “young warrior” and is the perfect name for this Extraordinary TinySuperhero.

It’s impossible to imagine how it would feel for your brand new, first born son to be 1 of only a couple of dozen people in the United States living with Harlequin Ichthyosis. That’s less than 24 people in a population of over 300 million. This was the reality that Super Evan’s parents faced at his birth. About a year later, they found out that a sweet little girl named Brenna who lived just 1,000 miles away, was born with the same severe and rare disease. Of course they did not feel joy that another child would have to endure such a challenging skin disorder, but to find companions in the fight must have been life-changing.

You probably remember Super Brenna – she was our very first featured TinySuperhero! Both she and Evan were born with Harlequin Ichthyosis, the most severe of the 5 types of Ichthyosis.  Just days before Evan’s premature birth (at 30 weeks gestation), doctors were able to predict Evan’s diagnosis through 3D and 4D ultrasound. So, when Evan arrived, they were ready with some of the country’s experts on the rare disorder.

The biggest problem with Harlequin Ichthyosis is that there is not a cure. Without a cure, Super Evan and Super Brenna will continue their very, very, strict skin-care regimen daily for the rest of their lives. What does that look like? Well, for Evan it includes two 1-hour baths daily where his skin must soak and be exfoliated to manually remove the scales and excess skin. By the evening and second bath, Evan’s skin has already covered with scales that need to be removed.  (Think of peeling skin after a sun burn, but the peeled skin being the thickness of card-stock at times.) Harlequin Ichthyosis causes skin to produce ten times faster than that of the average person. While the skin is too thick to allow sweat to pass through, it also does not hold in moisture (this moisture is released in a form closer to evaporation than sweat). This inability to contain moisture means that he is at constant risk of dehydration, and the inability to sweat means that he cannot control his own body temperature. In reaction to this, Evan’s body builds even more skin as its only way to protect itself. This excessive skin production burns many calories, making it difficult for Evan to gain weight.

Life with Harlequin Ichthyosis means maintaining a balance so that none of these components above (dehydration, weight gain, moisturized skin, body temperature) get out of control. Evan needs to be kept in cool environments so that he doesn’t overheat, he needs to have a high caloric intake to make up for the calories burned, he needs to stay hydrated both inside outside so that his skin doesn’t dry and crack. Cracked skin is opportunity for infection, a constant risk for people with Harlequin Ichthyosis. In order to keep Evan’s skin moist, they use Aquaphor all day, everyday. So, just like Super Brenna’s parents, Evan’s parents are used to the grease stains that Aquaphor inevitably leaves everywhere – a small sacrifice to keep their son’s skin moist and safe from infection.

The commitment to this skin regimen that Harlequin Ichthyosis demands is one that never ends. This disease brings other battles as well. See, when your body produces skin all day everyday, it can build up really quickly. So, when babies are born with Harlequin Ichthyosis and haven’t had the chance to be exfoliated or scrubbed for many months, the build up at birth is quite shocking. But Super Evan’s family, like super Brenna’s, have been inspired and empowered to bring these truths to light. Because this is their truth and these are their babies, and they need a cure! These family’s face the sometimes cruel world we live in head on everyday, but are not afraid. Super Evan and Super Brenna are not afraid to look different, in fact, they are incredibly loved and happy kids.

Evan’s mom was so thrilled to get this photo because it is one of the first times that Evan stood unsupported by someone! We were thrilled to see that his TinySuperhero cape was already honing his super powers! Evan is now 2.5 years old. He’s quite small for his age, and he’s still working on sitting on his own, but he continues to grow and progress. He sticks alongside his sidekick, Super Bruli, and together they bring great joy to many people.

But you see, what is amazing about all of our Extraordinary TinySuperheroes isn’t just that they have the will and strength to fight. And it isn’t just that they have super powers to defy odds, inspire doctors, and make strangers smile. These TinySuperheroes are empowering people and changing the world. Because of Super Evan, Super Brenna, and Super Wyatt, you (yes you) now know about Ichthyosis. See, Evan empowered his mom to take a stand, to get involved with FIRST, and advocate for a cure for Harlequin Ichthyosis. Evan empowered us to see what strength really looks like and to help in his parents’ fight to raise awareness. And now, you know of this incredibly rare disease and have the opportunity to educate others in the fight for a cure.

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FIRST is the Foundation for Ichthyosis and other Rare Skin Types. They continue to do great research and support these families. Evan’s mom is currently doing a fundraiser for FIRST, a TShirt sale, and I’m sure she would love your support!

You can continue to follow Super Evan’s awesome journey at his mom’s blog.

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

IMG_7433Today 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:

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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.

— Super Esmé’s Mom

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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!

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 Ireland’s Mom

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 was 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.

 

Super Elijah

Elijah has filled the hearts of many in a very short time.  He has brought so many people together and has left an impression on all he has crossed paths with.
— Super Elijah’s Mom

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Meet Super Elijah – an incredible TinySuperhero who really needs our love and support right now.

Elijah was born on September 14, 2010. With 3 older siblings, he was a welcome addition to the family! When he was about 1.5 years old, Elijah started losing some of the motor skills and the words he had developed. After seeing several doctors, many specialists, and going through dozens of tests, Elijah was diagnosed with Batten Disease.

Batten Disease is a disorder of the nervous system, and is considered a rare disease (occurs in about 2 of 100,000 children in America).  There are four types, and there are currently no available treatments or cures. Elijah has the early infantile version, which is the most aggressive.  Since February 2011 when his symptoms first appeared, Batten Disease has already taken a great toll on Elijah’s body.  Everyday is a fight for this TinySuperhero and his family. He has great sidekicks supporting him, but what he really needs is a miracle – a cure. His family, friends, prayer warriors, and I believe that miracles do happen and a cure can be found.

Currently, Elijah suffers seizures, loss of vision, loss of strength and mobility, and weight loss.   They have been using trial and error to find medications that keep Elijah comfortable.  About two weeks ago, Elijah had a G Tube placed, which was welcome and celebrated. He worked so hard to gain strength and weight to undergo the surgery. “Even though this disease is slowly taking away his ability to move and speak Elijah still shows each of us how much he loves us and enjoys his time with each  of his siblings.” -Super Elijah’s Mom

Pic 3Today, as we learn of Super Elijah, we celebrate this awesome, strong, heroic TinySuperhero.  He has the most beautiful brown eyes, gorgeous red hair, and the sweetest smile. He loves the lights on the Christmas tree, and he is the light in his family’s life. Elijah is in the heat of his battle with Batten Disease right now, as you read this, and they need our help.

How can we help? First, we can love him! You can show your love and support to them through hisFacebook Page: Elijah’s Journey. We can also educate ourselves and others about Batten Disease, and we can give support for more research:

http://www.bdsra.org/please-join-our-2012-annual-fund-challenge-for-bdsra/

Elijah’s family radiates love for their TinySuperhero. They are cherishing every moment they have with him, but they remain hopeful for a miracle that will save Super Elijah’s life. His battle is hard, but he is fighting with pure dignity. We are very, very proud to honor him as a TinySuperhero.

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Our family has lived many moments of joy and happiness since God blessed us with Elijah. His infectious laughter, smiles, lovable personality and who can forget all the dancing he has already done that has brought joy to so many. He has joined our family together in a way that we can not explain. While God has been with us through all the joyful times we know He will continue to carry us through these struggles as well.

— Super Elijah’s Mom

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Become a Hero: Buy One, Give One

Hi!  Super Puddles here. Since we featured our first TinySuperheroes, we have been introduced to SO many more Extraordinary TinySuperheroes. We’ve met  SuperBrenna’s friends, Isaac’s friends, Wyatt’s friends, Case’s friends…and their friends’ friends! These kids are amazing and have overcome so many obstacles in their young lives, and we think they all deserve to be empowered with their very own TinySuperhero cape!

But we’re going to need your help! For the month of February, we are going to Spread LOVE and empower all of these Extraordinary TinySuperheroes! For every one cape you purchase at our new online store, we will donate a second cape to an Extraordinary TinySuperhero! Our goal is to sell 50 TinySuperhero capes so that we can empower 50 additional Extraordinary TinySuperheroes in February! That’s 100 new TinySuperheroes empowered in one month! We can do it with your help!

We have a long list of Extraordinary TinySuperheroes who are ready to be empowered, but if you have one in mind, we’re happy to donate your additional cape to them!

Please consider helping us empower Super Brenna, Isaac, Wyatt, and Case’s fellow Extraordinary TinySuperheroes, by purchasing a personalized cape for your special TinySuperhero from our new online store below:

BUY ONE, GIVE ONE HERE!

In just one month, TinySuperheroes has evolved immensely, so we want to share our Mission Statement with you:

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!

Thank you for helping us empower these Extraordinary TinySuperheroes!

Super Case

“He brought this family to a new normal and has shown us how special, special needs really are. He has taught us to live in today and deal with tomorrow when tomorrow comes. He is our blessing, our lesson and our tiny teacher.”

— Super Case’s family

We are so excited for you to meet Super Case – a true TinySuperhero.  You know the saying “the best gifts come in small packages”? Well, Case is proof.

When Case’s mom was 25 weeks pregnant, the doctors presented Case’s parents with a grim prognosis. They couldn’t figure out what exactly was causing Case’s extreme slow development, but they provided little hope that their fourth child, and first little boy, would survive.  Like all of our TinySuperheroes, Case ignored the doctors, and today he is trotting around, dancing, and just celebrated his second birthday on December 21st!

Case was born at 36 weeks gestation, weighing just 2lbs 13oz. He was quite a small bundle of joy! You can imagine his parent’s relief when they heard their “mini man” crying upon arrival. The cause of Case’s unique size remains undetermined and is labeled as an “Undiagnosed Underlying Syndrome”. After 38 days in the Children’s hospital, Case was able to go home, weighing 4lbs 1oz.

At 25 months, Case now weighs 17lbs, the average weight of a 6 month old. While developmentally he’s keeping great momentum (walks, uses sign language, gives fist pumps, and blows kisses) he has several other medical issues to battle daily: brain stem abnormalities, low muscle tone in the right side of his face, sub mucus cleft pallet, narrowing in his throat, slow mortality, GERD, aspiration issues, abnormalities of the heart, a tethered spinal cord that was untethered, a dysplastic, multi-cystic left kidney, fluid in the right kidney….this is only the short list. Since before he was born they’ve qualified him as “Failure to Thrive”. Case has 22+ doctors, specialists, and therapists to work through these issues and is about to have his 5th surgery.

One of Case’s biggest struggles has been with eating. It is very difficult for his parents to insure he is intaking enough calories, and that he can keep them down. Currently, he is fed through a J feeding tube 22 hours a day.  This is why he carries around the coolest little backpack ever (I’m sure it also holds his other secret superhero tools).
There’s a reason why I listed all of these obstacles that Case faces (and I left out many).  While his medical conditions are quite unique, they aren’t what make this little man so special. Case’s soul radiates. It radiates joy, peace, and resilience. If you had the privilege of speaking with his mom, you would see that the apple doesn’t fall far from the tree.  This family of 6 sees their sweet Case as a blessing, and indeed Case blesses everyone he meets.

While under 2 years old, under 20 pounds, and just over 2 feet tall, Case is changing the face of disability. When curiosity strikes another shopper, Case takes the opportunity to make a friend. Not that he’s lacking attention – he’s got 3 older (adorable) sisters wrapped around his little finger at home!  Not to mention his extended family at the Ronald McDonald House of Pittsburgh, their second home. As his family says “Case is Case”, but Case is also a miracle and a world changer:

“Once I got over the fear and faced the reality of raising a ‘disabled’ child I realized what a blessing it is to be his mom. He may be disabled but he had never let that define him. His ABILITIES out weigh his DISABILITIES. He is able. He is able to have peace in the midst of chaos. He is able to overcome obstacles. He is able to love when most would hate. He is able be be different and not ashamed. He is able to be strong while others would be weak. He is able to endure pain and be pleasant. He is able to rise above the sentence of a disability and embrace life. He put the ABLE is disabled and amazes us all.”

— Super Case’s Mom

I encourage you to continue to follow Case’s journey, follow his mom’s blog: A Very Special Case or his Facebook Page!

Super Wyatt

“Wyatt is going to overcome every challenge that he is going to encounter in his life. No, he will conquer them. I really believe that he is going to live up to his name and he will be a modern day warrior.”

— Super Wyatt’s Mom

One look at this sweet, sweet smile and you’d think that this TinySuperhero just flew on in, ready to save the world!  Well, he’s definitely a TinySuperhero, and he’s already changing the world, but Super Wyatt’s journey leading to this beautiful photo has been far from easy.  His TinySuperhero status has been too well deserved.

Super Wyatt is actually half of a Dynamic Duo. At 18 weeks gestation, Wyatt’s twin brother Michael left this world to be his family’s TinySuperhero Angel. While he is deeply missed here on Earth, Wyatt and his parents know that Michael is never far away. Super Michael’s star is on Wyatt’s cape, reminding Wyatt he is never fighting alone.

The loss of Michael was understandably devastating to his Mom and Dad. In the midst of their grief, they also had to take extreme precautions to hold off Wyatt’s birth as he developed more. After 9 weeks of bed rest, Wyatt could wait no longer and was born at 27 weeks gestation, weighing 2lb 4oz on April 15, 2012. His early arrival led to the usual NICU procedures of intubation and careful watch. Soon Wyatt was breathing on his own, but he still had another major hurdle ahead.

If you met Super Brenna, you remember that there are five types of Ichthyosis (a family of genetic skin disorders). Super Wyatt was born with a different form of Ichthyosis called Epidermolytic Ichthyosis (EI). EI is only found in 1 out 300,000 Americans. Some symptoms of EI include: thick and hardened skin, formation of scales, coupled with fragile skin that is prone to blisters and infection. Wyatt displayed the symptoms of EI right away, and his parents were unable to really touch him for weeks. After 97 days in the NICU and over 1 million dollars in medical bills, Wyatt finally got to go home.

Like the Harlequin Ichtyhosis that Brenna is fighting, no cure is available for Epidermolytic Ichthyosis. Wyatt’s future is bright, but his skin will always require exceptional care. He is now 9 months old, weighs 13lbs, and has the best giggle! His skin is sensitive, vulnerable to blisters and always at risk of infection, but Super Wyatt’s smile helps his parents know that everything will be okay.

This tiny guy is wasting no time making his mark in our world! There is no cure for EI, but there can be! Wyatt’s family has become involved with F.I.R.S.T. (Foundation for Ichthyosis and Related Skin Types). Among other things, F.I.R.S.T. is committed to continuing research to find better treatment and cures for kids like Wyatt and Brenna. Super Wyatt convinced his mom and dad to run a half marathon to raise money and awareness for Ichthyosis. They will be “Running for Research” on May 5, 2013 and are hoping to raise $60,000, which will fund a research project for F.I.R.S.T.

Super Wyatt and Super Brenna deserve our help! If you’d like to donate to their fundraiser, you can do so here. Otherwise, the least we can do is spread the word. Help them educate people on Ichthyosis so that we can find a cure for these TinySuperheroes! Share their stories with your family and friends!

We are so blessed to have Super Wyatt and his Angel brother as our TinySuperheroes. We honor his brother, Michael, who is dearly missed. You can read more about Wyatt’s journey on his mom’s blog. Wyatt means “little warrior”, but we think Super Wyatt is a BIG warrior – we are inspired by him!

 

Super Issac

“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

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 – 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.”

— Super Isaac’s Mom

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!

Super Brenna

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.

— Super Brenna’s Mom