Super Brock’s Journey

The dictionary definition of rare is “a thing not found in large numbers and consequently of interest or value” and also “unusually good or remarkable”.

Unusually good or remarkable…I’ve never been so impressed by a dictionary’s definition.

I’d like to introduce you to Super Brock. Super Brock is unusually good and remarkable. He is also rare and overcoming a genetic condition called Hallermann Streiff Syndrome.

Hallermann Streiff Syndrome is “a congenital disorder that affects growth, cranial development, hair growth and dental development. There are fewer than 200 people with the syndrome worldwide.”

Super Brock was born on March 26, 2014. He did not receive his diagnosis until he was 3.5 years old! Since birth his family and doctors have been searching for answers to help him grow.

Super Brock is a tiny guy. He is 4 years old and weighs just under 21 pounds. He is about the same size as his one year old sister, but inside this tiny body is an amazing and typical 4 year old boy.

Super Brock is intelligent, funny, wild, feisty and spirited. He is ALL boy and loves watching Magic School Bus. “People look at him and see an intelligent one year old and are completely shocked when we tell them he’s 4 years old.”

His best friend is his little sister, Jayleah. “He loves her and she loves him. She goes to his appointments and therapies like it’s a normal everyday thiang. It is just our life. He works with his sister on her walking and she’s a year old and the same size as him but he doesn’t care.”  In fact, Super Brock often finds the advantages of being small – “he can do things and get away quickly and laughs about it.”

Super Brock also has Pierre Robin Sequence, a congenital condition causing facial deformities such as cleft palate. This has resulted in several surgeries for Super Brock.

In January of this year Super Brock had a surgery called a Furlow, a procedure to stretch the soft palate (which had been previously repaired). Super Brock coded on the doctors during this surgery giving everyone a major scare. He was intubated and saved by his ENT who was performing the surgery.

Eating and speaking are also difficult for Super Brock. He has a Gtube to help get the nutrition he needs and he has learned sign language to help him communicate.

Through his journey, Super Brock has revealed many super powers.

  • He can turn anyone’s bad day into a happy one. People often summon him to their house just to get a dose of his joy!
  • He is so resilient. He has overcome every obstacle placed in his way. He doesn’t let anything, including his size, slow him down “he just adjusts to make it work for him”.
  • He is an amazing singer.
  • He is so happy!

One of the hardest part of being Rare is that there is so much unknown. Every case off Hallermann Streiff Syndrome is unique. They do expect a full life for Super Brock, but how much and/or when he will grown is a mystery.

We are so honored to have Super Brock on our Squad. What an amazing example of just how remarkable life is. We are honored to spread awareness for Hallermann Streiff Syndrome. Super Brock, you are remarkable, indeed!

If you’re interested in smiling…you can join his Facebook Group here!

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