NIna's interview
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How did all start?
My son was born with BPES. He inherited it from his father who was also born with it. To our knowledge, my husband was the first in the family to have it.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was aware that it was hereditary and was pretty sure from the ultrasound pictures that my son would have it. It did take until he was almost three months old to convince his GP that he had BPES and needed to see a specialist. Once we saw the pediatric Opthalmology team at Children's Hospital, it was confirmed and talks of surgery began.
For what medical specialties have you been treated? What has been the most useful specialty for your?
We have seen a pediatric ophthalmologist and an oculoplastic surgeon.
What have been your biggest difficulties?
The hardest part for my son, so far, has been dealing with extreme light sensitivity.
How has your social and family environment reacted? Have your social or family relationships changed?
Kids who meet Jett often ask "What's wrong with his eyes?" or "Why do his eyes look like that?". Kids are genuinely curious so we openly explain about his eyes and the surgeries he has had and, most often, they think it's cool.
Finally, what advice would you give to a person in a similar situation?
Listen to your gut. This condition is rare and GPs have usually never seen it so if you think you or your family member needs a specialist's opinion, get one.
