Leo’s Lighthouse

Meet Leo

 
 

IN SEPTEMBER 2017…

Scott and Gracileia Morrison learned that their then-9-month-old son Leo had a rare genetic disorder called  Bainbridge-Ropers Syndrome,  a spectrum disorder so rare that it was only identified in 2012. So rare, in fact, that to date  doctors believe fewer than 200 children in the world have been diagnosed. 

“Devastated doesn’t even come close to describing our initial reaction - the fear, the hopelessness, the sadness, the inability to process the future.  In an instant all the dreams you had for your child’s life - all the opportunity, all the hope - seem lost, but you’re still there, trying to understand how to possibly move forward." - Scott, Leo’s Dad

Initially diagnosed at 4 months with hypotonia, vision issues and early signs of developmental delay, Leo underwent an MRI and a number of evaluations at NewYork-Presbyterian/Columbia University Medical Center.  After all tests came back without giving any indication of what Leo might be facing, the Morrisons had a meeting with geneticist Dr. Wendy Chung.  She advised them to authorize a genetic screening, and less than three months later they received the fateful call.  With this diagnosis, many of Leo's behaviors and characteristics began to make sense. 

Like most children with BRS, Leo had been diagnosed with failure to thrive,  had missed significant developmental milestones, and had vision problems. He exhibited a multitude of common BRS traits like hand flapping, head shaking, poor eye contact, fascination with water, difficulties keeping food down, mobility issues, and some early signs of autism.  He is also nonverbal.

“If these past 10 months have taught us anything, it’s that you have to try and stay positive,  you have to keep going.  There’s no other choice.  Leo deserves that from us - and he and every other child with a disease need us to do our part by becoming their advocates, and finding solutions." - Gracileia, Leo’s Mom

Also disheartening is the wide spectrum of symptoms children suffer with BRS.  For example, some are in wheel chairs, some walk with help. Most have no speech, while some have minimal speech. We’ve lost two BRS children this year due to illnesses associated with the disease, and we’re only beginning to scratch the surface of what we might be up against.   

 

 
 
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Leo, 18 months

Leo, 18 months

A Day in Leo's Life

Leo’s day-to-day routine is pretty straight forward. Leo’s an early riser and usually gets up around 5:30am.  Leo’s mom, Gracileia, has dedicated her efforts to managing Leo’s daily care which includes 10-12 therapies each week, centered around physical, occupational, developmental, speech, and feeding therapies.  Monday thru Friday is focused on these therapies beginning at 9AM, with a typical day including a morning session and an afternoon session.  Leo wears glasses, a hand splint during much of the day to prevent his thumbs from tucking inward, and orthotics for both feet in an attempt to give him more stability as he's trying to learn to walk.  Leo’s not great with naps, so nap times are usually less than 30 minutes, but that never impacts him much - he’s a happy little guy who's almost always in a great mood. He’s curious and engaging, especially with toys and objects like pots and pans.