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.
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.
"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
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."
"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
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."
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.
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!
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!