Our Why

Who is Robert?

Robert is a fun-loving and super sweet 5-year-old little boy who has never met a stranger. Ask anybody who knows Robert, and they will beam describing his unique personality, total disregard for his ailments that regularly disrupt his everyday life, and inspirational character. Despite his larger-than-life personality, since being diagnosed over 3 years ago with Multipolysacharides IVA (Morquio A Syndrome), which is a rare genetic disease prohibiting the body from breaking down certain sugars, Robert has suffered numerous surgeries, ailments, and has grown less than an average of 2 inches per year (and the growth rate is declining).

The Severe Effects of Morquio Syndrome

This disease is severely progressive, and the effects will get significantly worse with time. Just a decade ago life expectancy for a child with Morquio would often be around 20 years old and while recent medical advances should help to extend Robert’s life expectancy, the effects of the disease are real and apparent. Robert has already gone from a very coordinated 2-year-old in the 25th growth percentile (after being born in the 90th percentile) to a 5-year-old who, simply put, cannot keep up with peers, falls often, struggles to climb a flight of stairs, and does not register on the growth chart.

As most children Robert’s age play carefree and are learning various sports, Robert has, with rare complaint, had a port in his chest for over 3 years, undergone over 160 weekly 6+ hour treatments, and recently spent 6 months in a neck brace while 4 vertebrae were surgically fused with implants and bone grafts in an effort to protect his spine from severing his spinal cord. At 6 years old he can expect to travel several states away to have major hip reconstruction and a multitude of joints straightened/supported surgically, which will require six weeks in a body cast and up to a year of rehab to re-learn how to walk.

Further, this disease does not stop with effects to the bone. Robert will likely suffer (and in some instances, has already suffered) from numerous other health defects to his “soft tissues”, including heart, lung, and spinal cord issues, together with hearing loss and eyesight complications, compromised immunity and extreme low energy.

Robert’s body is failing him every day, getting worse right in front of our eyes, and left to current treatment options he will have limits on his quality of life and life expectancy.

Our Ask

We live in unprecedented times where real medical advances not only can happen, but with significant financial assistance are actually happening. We have talked with parents who have succeeded in funding, and then actually finding, medical breakthroughs in similar rare diseases. It can be done. Please help us, his parents and founders of A Cure for Robert, Inc., along with countless friends, board members, and family fill the void that currently exists for new treatments, medicines, and advancements for this very rare disease.

We have to succeed. It’s about our child and thousands of others around the world facing Morquio and others with similar rare diseases. And with your help we truly believe we can.

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