Morquio syndrome 

Children’s Therapy T.E.A.M. Brothers with Morquio syndrome aim to help children learn about their rare disease

Brothers, Titus and Zane, share a unique brotherly bond. Both understand what it is like to grow up with a rare syndrome most people have never heard of. Each was diagnosed as a toddler with Morquio syndrome. Now elementary aged, the boys have made it their mission to educate kids and adults about their syndrome. Their YouTube channel called Morquio, My Brother, and Me offers many insights.

Therapists Integral to Life

Morquio A syndrome impacts physical growth and development, but not cognitive abilities. When spending time with the brothers, their humor and intelligence is evident. The boys’ Children’s Therapy TEAM physical therapist, Lori Hannon, has worked with them for many years. She enjoys their jokes and games, while also focusing on their physical development. She helps them maintain as much strength, range of motion, balance, and endurance as possible. This is a challenge as the syndrome progresses in severity over time.

In the boys’ words, Lori “makes us do hard stuff.” The motivation to carry on and continue to work hard is supported by the trusting relationship therapists have built with the boys and their family over time. The boys’ mother, Kimberlee Brooks, shares, “Our therapy team is integral to our life. It has been great to see their relationship with the kids as the boys have developed.” Each time the boys learn a new joke or post a new YouTube video, their therapists are some of their biggest fans.

Growing up as a little person with Morquio

There are more than 300 different conditions that can cause dwarfism and the brothers’ Morquio Type A is one of them. The boys say, “Mama says we won’t be tall like Goliath, but we’ll be brave like David.” Indeed, the boys have had countless opportunities to be brave. They have endured many surgeries as Morquio impacts their bones, joints, and organs. From spending weeks in neck braces and body casts to learning to walk again after surgeries, the boys share about their journey on ‘Morquio, My Brother, and Me’ in ways other kids with dwarfism and those without can understand.

You can’t catch Morquio like a cold!

The boys want the world to know that Morquio is not an infectious disease. You can’t catch Morquio like a cold, rather it has to be inherited. In scientific terms, a deficiency of an important enzyme causes buildup of glycosaminoglycan in the boys’ cells. However, this is not what the boys tell their friends! They simply say their cells don’t know how to recycle.

Brothers on a Mission to educate kids about Morquio syndrome

Six year old Zane told his mother, “I think I have this so I can teach more children about it.” This is exactly what he has done in his “Zane Says” YouTube episodes. Zane loves the camera. From dressing up in an FBI uniform to investigate Morquio, to ensuring his viewers know that “spica casts” don’t really have spikes, Zane brings his playful personality to his videos. Titus, on the other hand, excels with his intellect and deadpan humor.

The boys are typical kids in many ways. They enjoy playing board games and telling jokes. Their videos explore many of the milestones of childhood like riding a bike. They also share insights with things many kids don’t know about. From regular infusions for their ‘superhero juice’ to nervous feelings before surgeries, and rehabilitation afterwards. Through sharing their story, the brothers are fulfilling their mission to educate, and in doing so, inspire us with their grit and courage.

Visit the brothers’ Morquio, My Brother, and Me YouTube here.