Red Fred Project
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Malaki

 
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Storyteller: Malaki Rodriguez

Extraordinary Circumstance: Osteogenesis imperfecta type VII
Book: (nearly completed; needs funding)

Words by Dallas Graham
Design & Illustration by Jordan Hebner
Photography by Dallas Graham
Edited by Shirley Manning


 
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MALAKI RODRIGUEZ is a happy eleven-year-old boy. He was born with osteogenesis imperfecta type VII, also known as brittle bones. There are only about four other documented cases of this type of osteogenesis imperfecta. Malaki was also diagnosed with ADHD and PDD-NOS. This combination of diagnoses has been a learning experience, especially since Malaki has fractured bones so many times, because he was being impulsive. He is an only child and loves to play video games and loves music. His dog Zero is being trained to be his service dog and is the inspiration for the main character in Malaki’s book. His favorite color is red. He loves to listen to Post Malone and also loves pepperoni pizza – and could eat it every day.


Osteogenesis imperfecta type VII

Osteogenesis imperfecta (OI) is a group of rare disorders, characterized by fragile bones that break easily. OI is caused by genetic mutations that damage the connective tissue responsible for building strong bones.

There are different types of osteogenesis imperfecta, and people experience a wide range of symptoms. Osteogenesis imperfecta type VII is a rare form of the condition, passed down recessively. It often causes short stature, and may resemble type II and type IV. Type VII generally causes moderate to severe or life-limiting symptoms.

There isn’t a cure yet; but there are treatments that help relieve symptoms, strengthen bones and muscles, and keep patients moving independently. These treatments include going to physical therapy, surgically placing metal rods in bones to prevent fractures, using plastic braces to protect bones, and surgeries. Experts estimate that one in 20,000 people in the US have a form of OI, although only about 10-15% are caused by recessive mutations.

Learn more about osteogenesis imperfecta at these great resources:

Osteogenesis Imperfecta Foundation: www.oif.org
National Organization for Rare Diseases: www.rarediseases.org

RED FRED PROJECT WOULD LIKE TO THANK OUR FRIENDS AT PATIENT WORTHY FOR THEIR RESEARCH AND PARTICIPATION IN SHARING THIS VERY IMPORTANT INFORMATION WITH US REGARDING THIS EXTRAORDINARY CIRCUMSTANCE. YOU CAN LEARN MORE ABOUT THEIR WORK AT PATIENTYWORTHY.COM.