Focusing on Life
Patient: Morgan Asinowski
Diagnosis: Familial Dysautonomia
Sight Restored: November 2012
High fevers. Swallowing problems. Poor balance. No reaction to pain. Corneal scars. Extreme swings in blood pressure and heart rate. Absence of tears. Spinal curvature.
What does this seemingly random collection of problems have in common? They are all part of a rare condition called familial dysautonomia, or FD— something Morgan Asinowski and his family are very familiar with. Morgan is one of only 350 people worldwide diagnosed with FD, a genetic condition that affects the sensory and autonomic nervous systems, causing severe problems.
Morgan is a regular teenager in many ways: he likes hanging out with his friends in his hometown of Montreal, Canada - riding his bike to the local dog park, watching TV, and playing video games. According to the Dysautonomia Foundation, FD was once considered fatal, but recent advances in research and treatment have resulted in dramatic improvements in life expectancy and quality of life for people like Morgan— and he intends to enjoy it.
When asked about how he manages some of the more troubling symptoms, such as blood pressure and heart rate fluctuations and itchy, blotchy skin, Morgan shares, "It makes me feel unwell and out of control." Pointing to one of his favorite pastimes, he elaborates "watching TV helps. It distracts me and calms me down."
Morgan's mom, Florence, concurs: "As parents it is very difficult for your kids to go through so much. When Morgan is having an autonomic crisis it is critical for his health- and his well-being- to get it back under control as soon as possible. Without having the TV to help calm him down, these crises could increase in intensity — and that's dangerous."
In 2009 Morgan sustained an injury to his left cornea, a common problem due to a combination of dryness, a lack of corneal sensation and slower healing process. An emergency trip to the ophthalmologist resulted in devastating news: a temporary tarrsoraphy (sewing the eyelid partially shut). Morgan's already deteriorating vision became nonfunctional; he could not see the TV, even when sitting a foot away.
Soon after reversing the procedure he suffered another injury— this time to his right eye. Another trip to the hospital and another tarsorraphy were the result. Another corneal injury in 2012 led the doctor to recommend sewing both eyes shut- permanently. His parents knew there had to be another option.
In November, after learning about PROSE from another FD family, they made the trip to BFS for treatment, including application and removal training for the whole family. Morgan (pictured with Anna Cressey, OD, and Karen Carrasquillo, OD) had this to say about his time at BFS, "Dr. Karen and Dr. Anna are awesome!" Able to now see the TV he exuberantly added, "I like the entertainment at BFS— its great!"
Morgan's dad Nelson agrees: "The staff has been just amazing. Morgan still has corneal scarring - his vision will never be close to 20/20— but his eyes are protected and are no longer so dry and red. Had we known about PROSE earlier, some of the damage might have been prevented. We are just so grateful for what BFS has been able to do for us."
Anna Cressey, OD: "Working with Morgan and his family was such a pleasure. They are now able to focus less on his eyes and more on life as a normal teenage boy. During the past five years BFS has been privileged to treat almost 10% of the FD community; we are thrilled to have Morgan join this extraordinary group of people."