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Super Richie

“You’re off to Great Places!  Today is your day! Your mountain is waiting, So… get on your way!” -Dr. Seuss

Meet Super Richie! He was born on September 23, 2009, and was indeed born to move mountains!

When Super Richie entered the world, no one knew the battle that was ahead of him. He passed all of the newborn screenings, but tested positive in a PKU test when he was 5 days old and was immediately admitted to the hospital. PKU stands for phenylketonuria, and is one type of an Amino Acid Disorder. After several follow-up tests, Super Richie was diagnosed with mma cblc, genetic, also known as Cobalamine c deficiency. Basically, Super Richie’s body cannot absorb protein and instead proteins act like a toxin in his body.

During this hospital stay, Super Richie had a g tube placed, and because he was undiagnosed and untreated for several days, he had a brain hemorrhage, an effect of the disease.

Super Richie’s diagnosis makes him 1 out of just 110 people who are fighting Methylmalonic Academia with homocystinuria cblC. It’s a mouthful, and I won’t pretend to fully understand it, but basically it is a rare genetic disorder that prevents the body from breaking down certain amino acids that are found in protein. This can cause of variety of symptoms, and primarily affects vision, growth and learning.

Super Richie is legally blind, and the long term implications for his vision are still unknown. As a TinySuperhero, however, he did not let this slow him down. Super Richie caught on to reading braille quickly and taught his family how to do so as well! Because of the concerns of further vision loss, he takes a daily shot of Vitamin B-12. He has been receiving daily injections since he was 5 days old and takes medication three times daily!

Cognitive learning, memory and processing also don’t come easy to Super Richie. He didn’t speak until he was 3 years old, but just like every other hurdle that is placed in front of it, he soared over it with confidence and determination. He works incredibly hard in speech therapy, physical therapy and occupational therapy and he’s become the favorite patient of his optometrist, behaviorist, geneticist, neurologist and psychologist.

Super Richie’s family considers him the biggest blessing in their life. He has two older sisters (Super Ava & Super Adriana) who are Extraordinary Super Sidekicks and push him to exceed his dreams. Typical things like getting dressed can be challenging for Super Richie, but as a family they promote his independence.

“He sees what we can’t. He sees the happiness and joy in every detail – as simple as smelling a flower, doing chore or even turning the shower on alone.”

Some days are a wild success, some days require patient repetition and some days are full of struggle, but Super Richie wakes up each day with a smile and tries his best! His family is witness to his super powers on a daily basis. He has taught them that different isn’t always bad; sometimes different is the start of something amazing.

Super Richie has a few words of encouragement to leave you with:

“I’m not different or sad. I’m special because I show you every day the meaning of the extraordinary daily things that we take for granted! I’m not different – I’m teaching you what living is all about. Remember, every day is a new day!”

As you go about your day and continue working towards embracing differences as you approach the world, keep Super Richie’s smile and story close to you heart. It will inspire you to move mountains!

To empower a child in your life with a TinySuperheroes Cape, click here!

2 replies
  1. Lindsay c says:

    That’s my boy! And every day we move mountains! Thank you robin from the bottoms of our hearts! You have moved us!

    Reply
  2. Toni Rafecas says:

    Well done Richie!! our best wishes for all the family. We are proud to say that we are also the parents of Martina, a little supergirls also with CblC disease. She was born the 24th of July of 2014. You can meet her a little bit better in http://www.labombolladelamartina.com
    You can also find us in instagram “labombolladelamartina”
    Wish we could get in contact!! good luck family!! : )

    Reply

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