Rare Disease Day

Today is Rare Disease Day. Last year, I didn't even know Rare Disease Day existed, and today I feel connected to dozens of families to whom this day holds great importance. For every one family I've met, I know there are hundreds more.

Today, think of the TinySuperheroes we have introduced so far who are living with a Rare Disease: Super Brenna, Super Evan, Super Case, Super Wyatt, Super Elijah, and Super Esmé.

Rare Disease Day is an opportunity for us to show these special families that we care. It's an opportunity for us to join them in their campaign to raise awareness --> to gain more funding --> for more research --> for more answers. Today we are honored to introduce two more Extraordinary TinySuperheroes who are battling a Rare Disease: Super Casen & Super Mabel.

Both Super Casen and Super Mabel have Batten Disease (like Super Elijah). They are among only 1,200 people in the world currently living with this diagnosis. Scroll down to read their stories, send them some love on their Facebook pages, then share it with someone - the first step to raising awareness.

We know there are thousands of kids who are also living with a Rare Disease. We at TinySuperheroes would like to empower all of them with their very own cape - but we can't do it without your help. Today is the last day of our February promotion. If you purchase a cape today, we will match it by donating a cape to empower an Extraordinary TinySuperhero. And, in honor of Rare Disease Day, we will make sure that these donated capes go to Extraordinary TinySuperheroes who are fighting a Rare Disease. Please contact us through the link below if you have any questions or if we can help in any way.

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

Thank you for your support, and for helping us empower Extraordinary TinySuperheroes.

Love,

Super Puddles

Super Casen

Super Casen

Texas

Today, on Rare Disease Day, it is our pleasure to introduce you to Super Casen - an Extraordinary TinySuperhero living with a Rare Disease.

Super Casen is six years old, hails from Texas, and is a big Texas Longhorns fan! Casen was born on January 15th, 2007. He was the perfect baby boy. Casen's first three years of life went as every parent dreams - sitting, rolling, eating, babbling, crawling, walking, talking...Everything was normal until he had his first seizure a few days before his third birthday. 

Between November and December of 2009, Casen had more seizures, including 3 on Christmas Day. At this point, Casen's parents were very concerned, but had little direction as to what was wrong. They had been to many doctors, but after several seizure-induced ER visits, they were finally directed to a neurologist at Medical City - Children's Hospital in Dallas, Texas.

Casen proceeded to go through every test you could think of and several seizure medicines without any results as to what was causing the seizures. By this time, Casen's development was regressing. He was given speech therapy  to try to help, but by 2011, at 4 years old, Casen was no longer walking and had lost all of the language he had developed.

On June 21, 2011, Casen's family got answers - the kind of answers that all parents dread. Casen was diagnosed with Late Infantile Batten Disease. Earlier we introduced you to Super Elijah, who has Infantile Batten Disease, where symptoms ususally appear between 2-6 months of age. Casen has Late Infantile Batten Disease, which presents symptoms between 2-4 years of age. Batten disease is an inherited disorder of the nervous system. It is not currently preventable. Both forms of Batten Disease are fatal and at this point there is only experimental treatment and no cure. Children with Late Infantile Batten Disease usually lose the battle between age 5-12. 

Casen carries a very special super power through this fight, which enables his family to keep hope for a cure - he has a smile as big as Texas! Children with Batten Disease have shown that they recognize voices of family members by smiling, and smiling is Super Casen's forte. 

Super Casen is fighting the clock and he, along with the other children suffering from Batten Disease, hold onto the hope that a cure can be found in time for them. As is typical with Batten Disease, Super Casen has already lost his mobility, speech, and eye sight. He just recently had tests that showed his kidneys are still functioning properly. Casen's family has not given up hope for a cure, but more funding is needed in order to initiate more research and testing.

Super Casen is an Extraordinary TinySuperhero with a wide reach. He is SO loved by his parents, family, and friends. He even has over 10,000 people showing him love on Facebook! 

So, on Rare Disease Day, what can you do for Super Casen and his family?

1. Show Super Casen love and let him know that you think he is indeed an Extraordinary TinySuperhero. Write him a note on his Facebook page -this type of encouragement is uplifting and rejuvenating to a TinySuperhero's family. His Facebook page is http://www.facebook.com/casenscrusade

2. Share Super Casen's story and help them in their Crusade to raise awareness about Batten Disease and other Rare Diseases.

Thank you for helping us love and empower this Extraordinary TinySuperhero.

Click here to donate a cape to another Extraordinary TinySuperhero fighting a Rare Disease.

Super Mabel

"I know that Mabel is a super hero. She has the ability to change this world tucked inside of her little frame. Her spirit is so pure and she is full of ease. She has changed lives of those around her from the very moment she was born and continues to do so every single day." - Super Mabel's Mom

Super Mabel

Illinois

This is Super Mabel, an Extraordinary TinySuperhero who, alongside Super Casen and Super Elijah, is living with Batten Disease.

Super Mabel was diagnosed with Neuronal Ceroid Lipofuscinoses (NCL), or Batten Disease, two days after her second birthday. Prior to her diagnosis, Mabel's family lived in a world of unknown. They didn't know what was wrong, what would happen, or what to do for their sweet baby girl who was suffering right before their eyes. Mabel has a redheaded older sister and brother who, along with their mom and dad, are Mabel's sidekicks.

When you look at Mabel's big brown eyes and beautiful smile, it is hard to think that she is suffering. "Our reality is that Mabel has had it really rough. Her brain seizes and her body twitches. She can't see well, eat well, or even go to the bathroom well. She is tired and cries non stop. She can't sit up on her own, can't seem to grow and has never met one single milestone on time or even close for that matter." 

Mabel has an aggressive form of a terminal brain disease, but it is in this harsh reality that Super Mabel's most incredible super power shines through. Super Mabel brings great joy, peace, and change in the midst of great pain. "There is so much beauty here. So much more beauty than there is pain."

Mabel is only two years old and her small body has already degenerated, but Mabel's purpose has not been compromised. It's impossible to understand, and very difficult to accept, why any child would have to suffer in this way; but it is quite apparent that Mabel has a purpose in this world. Mabel is changing people. She's changing how they look at disease, illness, and disability. She's changing perspectives on what is important and what is true. Simply by being herself, this TinySuperhero is changing hearts. 

One heart that has been transformed by Mabel is her sidekick mom. Mabel has inspired her mom to be her voice. Mabel has called her mom, and many others, to action. "Although I can clearly talk about her and our journey, it doesn't get easier. It's always hard realizing in the middle of what I'm saying that it's about our daughter. This isn't a cause that I just happen to be passionate about. This is our life. Our child. Our diagnosis. Our desperate plea to make sure others know the name of this sweet girl we call Mabel."

Super Mabel's family is committed to Mabel and other children suffering from rare diseases. They started a non-profit organization called Mabel's Able (Achieve, Believe, Love, Endure). This is their mission: "To raise awareness and help lower the statistics of rare and undiagnosed diseases. Living with a child who is undiagnosed is scary and lonely. Caring for a child in the midst of diagnosis is consuming and heavy. When people are educated and aware-they are more likely to help."

So today, on Rare Disease Day, we stand with them. We stand to support Super Mabel, Casen, Elijah, Brenna, Evan, Case...and the 30 million people that they represent who are fighting Rare Diseases in the US alone. We are proud to honor them as TinySuperheroes, and we are eager to educate, raise awareness, and inspire people to help. Super Mable needs a cure, and the movement starts with me and with you. Get involved with Mabel's Able, and follow Mabel's story on her mom's (beautifully written) blog.

"There are things in this life that are fleeting and insignificant. This is not one of them. This little girl, this day, these reminders-they are lasting."

Click here to donate a cape to another Extraordinary TinySuperhero fighting a Rare Disease.

Super Gabriel

"He's pretty much the coolest kid in the world. He saved my life, that's for sure. His story is one of happiness. At only 2 years old, he has overcome more than I have in my 22 years of life.  There's only one name for a person so strong...Hero." - Super Gabriel's Mom

Super Gabriel

Louisiana

In August 2010, an Extraordinary TinySuperhero was born in Louisiana to a superhero mom and dad.  Meet Super Gabriel!

When Gabriel was born, he had a heart murmur, a hernia on his umbilical tract, acid reflux, and jaundice.  By 4 months old he had RSV, sleep apnea, and fluid on the left side of his brain. By Gabriel's first year, he had more of less recovered from all of these complications, but to his family's surprise, their complex and blessed journey with their TinySuperhero had just begun!

During his first two years, Gabriel's development fell behind the expected schedule, and he began to withdrawal. One of his first super powers was revealed when he stacked a set up cups nearly perfectly in seconds! His parents were amazed, and began to investigate what made their TinySuperhero different.

Just days after Super Gabriel's second birthday, he was 'distinguished' with autism. "Like I told his daddy, he wasn't 'diagnosed'. He was 'distinguished'. He's not sick, he's exceptional."

Super Gabriel was pretty lucky to be born to superhero parents. His mom was 19 years old when he was born. Aware of the social stereotype assigned to young mothers, she wanted to show the world that at 19 years old, a woman like her could love, care for, and raise an exceptional child. She even started a blog, "Souls Never Wrinkle", to document the journey. Before she knew she would give birth to an Extraordinary TinySuperhero, Super Gabriel's mom was ready to love him and give him an amazing life. Certainly the super powers that accompany Gabriel's autism are challenging, but his superhero parents have given everything to help him succeed and enhance his super powers.

Since his second birthday, Gabriel continues his TinySuperhero life. He LOVES Toy Story and is great friends with Woody and Buzz, thinks everything is hilarious in the middle of the night, prefers watching only the first 3 minutes of his DVDs, would paint the world red if he could, prefers his diet to consist entirely of Vanilla Gerber Puffs, is magnetized to water, and thinks that cars and trucks - especially when driving fast - are amazing. Sure his super powers come with anxiety, stress, and caution for his mom and dad, but they smile when he's laughing at 4am, they've learned to love the first three minutes of Yo Gabba Gabba, and regarding Woody and Buzz - his mom says "Those guys have helped us through a lot". 

Super Gabriel's mom set out to write a blog about raising a child as a young mom. Instead, she's writing an amazing blog about raising an Extraordinary TinySuperhero. One of the biggest challenges of raising Gabriel is the public perception of behaviors that accompany Autism. We hope to help Gabriel's family show the world how beautiful these children are, and to teach that some things have to be handled differently with TinySuperheroes like Super Gabriel - and that is okay!

"We do not lead a normal life. We lead an extraordinary life."

Super Sophia Joy

Super Sophia Joy

Washington

On October 22, 2010 a very special, Extraordinary TinySuperhero was born named Sophia Joy. At five days old, she was diagnosed with Down Syndrome. Then, in 2012 she was diagnosed with Leukemia. Super Sophia Joy is fighting for her life as we speak - and our support, thoughts, and prayers can really help to strengthen and renew her incredible super powers.

Yesterday, my family was tremendously blest with the opportunity to personally deliver a TinySuperhero cape to Super Sophia Joy. When I heard about her story, I knew she needed empowerment as soon as possible, and when I found out they were just an hour south of us, I knew we just needed to go.

Sophia in October 2012.
Photo from Sophia Joy's Facebook Page.

Sophia started fighting Leukemia with chemotherapy on October 5, 2012. That day she had surgery to have a port placed and began her first cycle of chemo. Since that day, Sophia (and her family) have been in and out of the hospital for chemotherapy, fevers, and infections. For a family of 8, this is no easy feat.  Sophia Joy is the youngest of six children, born into an incredibly warm and loving family. She has four older sisters and one older brother who love her and have spent hours beside her in the hospital and even more hours making her smile when she's at home! They are definitely her TinySuperhero Sidekicks.

The chemotherapy that Sophia Joy has received eliminates her immune system almost completely. So between each cycle of chemo (5 total) the risk of infection is very high, and Sophia Joy has returned to the hospital with infection several times.

About two weeks ago, on February 3, Sophia had her last round of chemo - a day her family had been waiting for since they first heard the word Leukemia. The last round of chemo was the most intense, and several days later Sophia came down the brochiolitis.  At this point she had practically zero immune system left to fight the infection. This was quickly followed by other complications. On February 13 she had a breathing tube place, and on February 14th she was placed on full life support. They hoped that while on life support, her body could gain the strength it needed to fight off these infections.

On February 18, they were able to take her off of life support, but she still needed the breathing tube - and she still needed to fight the infection.  Today - Sophia Joy is still in the fight. We know that she has super powers that far exceed our understanding, and her family knows that she is protected by her loving God. They pray for a miracle, and they plead with God that they will be able to keep their TinySuperhero here on earth.

Yesterday we went to the hospital and we were greeted by Super Sophia Joy's 5 blonde hair, blue eyed Sidekicks. It became immediately clear that they needed empowerment too, so we gave them each a TinySuperhero cape (thanks to the generous donations of many). We know that as they combine their super powers with Sophia Joy's, that this girl is going to be SO strong!

I can't express in words to you how beautiful, kind, and loving this family is. And it is obvious that they all need their TinySuperhero as much as she needs them right now. They also need our help. Visit their Facebook page to find opportunities to help with the financial burden that comes along with this fight.

Please help us pass them love and support during this very difficult time. You can do so on Sophia Joy's Facebook page.  Her mom told me that she can't wait to see Super Sophia wearing her cape for many, many years to come! 

From our family to Sophia Joy's family - we love you and are praying for your sweet girl's recovery.

Super Owen

February is Heart Awareness Month, and throughout the month we have met  so many Extraordinary TinySuperheroes who are fighting Congenital Heart Defect. Congenital Heart Defect (CHD) is the most common birth defect worldwide and affects 40,000 babies in the United States each year.  We have lots of stories to share with you, but we wanted to first introduce you to Super Owen - an advocate for CHD awareness at just 11 months old!

Super Owen

Wisconsin

This stud is Super Owen. When his parents chose his name, they didn't know its meaning, but Owen means Young Fighter, and this TinySuperhero has definitely lived up to his name.

Owen's mom and dad were really excited when they found out they were pregnant, and then really scared when red flags arose during their 20 week anatomy ultrasound. The ultrasound revealed a Single Umbilical Artery (SUA). Usually  the umbilical cord has two arteries and one vein, but in these cases there is only one artery. About 25% of pregnancies with SUA are associated with heart and/or chromosomal defects. Many weeks and ultrasounds later, they found out that Owen was a part of this 25% and had some Congenital Heart Defects.

Owen was born on April 2, 2012. By birth he had already proven that he was indeed a young fighter and stubborn! 39 hours and a C Section later, Super Owen came into our world!

Owen had to go straight into the NICU because they had a good idea of what was going on with his heart. He had Type 2 Tricuspid Atresia, Transposition of  the Great Arteries, and a hypoplastic right heart. In layman's terms here's what Owen was dealing with: First, no blood was flowing through the tricuspid valve of his heart, causing his right ventricle to be severely underdeveloped. Transposition of the Great Arteries means that the aorta and pulmonary artery were switched, something that would need to be corrected by surgery right away. And finally, the entire right side of Owen's heart was underdeveloped, or hypoplastic.

Super Owen endured his first open heart surgery when he was three days old. This first procedure, called the Norwood, placed a shunt between his aorta and pulmonary artery and disconnected the pulmonary artery from his heart. After surgery, Owen spent his first month and a half in the hospital recovering.

Then, in August, Owen had his second open heart surgery called the Glenn Procedure. This 6-hour surgery helps his heart compensate for the underdeveloped right ventricle, and allows for more blood flow to the lungs. Again, Super Owen was a champ and went home after just 5 days!

What Super Owen is missing on the right side of his heart, he has made up for  in his personality! This little man is a ham! One of his super powers is his gorgeous hair - he's practically irresistible! And Super Owen is on the go! He's crawling, rolling, dancing, standing, drinking from a sippy cup, loving Cheerios, and always nearby his doggy sidekick, Bear.

Super Owen's fight isn't over. There is likely another surgery ahead of him, and he has to be especially careful not to get sick. He is also struggling with a rash on his body that they've yet to find the source of. But you won't see any of these things affecting this TinySuperhero's smile!

Owen's greatest super power is that at the young age of 11 months, he understands that he is not alone in fighting Congenital Heart Defects. He knows that while he's been consistently winning his battles, 4,000 other Extraordinary TinySuperheroes with CHD won't make it to their first birthday this year. While it occurs in nearly 1 out of 100 American births, there is little funding for research, no known cause, and no cure. 

Owen seeks to educate people about CHD (again, the most prominent birth defect in the world!!!) so that all of the Extraordinary TinySuperheroes born with CHD in the future have a bigger army on their side. During February, Owen even found a new friend with CHD everyday and shared their story on his Facebook page! 

We feel so blessed to empower this Extraordinary TinySuperhero, though in reality he is empowering us. Continue to be inspired by Super Owen though his blog, and Like him on his Facebook Page!

If you would like to empower one of Owen's friends fighting CHD with their very own TinySuperhero cape, you can do so at the link below. In February we are donating one TinySuperhero for every cape purchased!

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

Súper Angel

Super Angel

Guatemala

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!

For the month of February we will be donating one TinySuperhero cape to a kid like Sùper Angel 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 Evan

Super Evan

Connecticut

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

It's hard impossible to imagine how it would feel for your brand new, first born son to be 1 of only 10 people in the United States living with Harlequin Ichthyosis. That's 10 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 above 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.

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.

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