Luka born with PFV and needs prosthetic

During Luka’s first pediatrician appointment the doctor noticed something was wrong with his left eye, he suspected a cataract in his eye that lead us down so many eye appointments and eye exams and second opinions. We found Bascom Palmer eye institute and saw Dr. Berrocal she is widely known for complex pediatric congenital eye conditions. We discovered Luka has a rare eye condition called Persistent Fetal Vasculature (PFV), along with microphthalmia (a smaller eye) and a Cataract. PFV is a condition where in the womb you have blood vessels in the eye that help the eye develop and they’re suppose to go away however his did not, and it restricted the growth of that eye somewhere along the way in the womb. This is a rare condition and it’s not widely known or researched making everything very difficult. We drove to Miami to see Dr. Berrocal multiple times, she is known to be the most knowledgeable on PFV cases and has treated over 100 cases, so we feel very confident in her care and recommendation since she has seen all of the outcomes with or without surgery.

On Wednesday October 23rd Luka was scheduled to have surgery, and was put under anesthesia and had an extensive exam done by the surgeon to see what kind of damage his eye had. We were called in by the surgeon while Luka was asleep and she explained to us his complicated situation that his PFV is posterior as well as interior and is a little more complicated than usual. His eye is also noticeably smaller than his good eye, and she explained cases like his don’t achieve a greater outcome than light perception with all surgeries and patching and therapies. She advised against surgery and to let his eye just be, and let him grow up a happy kid with vision in one eye. This has definitely rocked our world learning his situation but after so many prayers and so much of our friends and family praying and supporting us we feel more at peace moving on with his condition.

Not doing any surgery still leaves us with a challenge, as Luka grows he is going to need a prosthetic eye (a scleral shell) to go over his little eye to promote the growth of his facial bones to provide symmetry for his face. His forehead is a little lower on the side of the smaller eye due to not having enough pressure from that eye but with the prosthetic it should fix this, as well as give a cosmetic appearance to match his good eye. We found a phenomenal Ocularist in Miami that was recommended by Dr. Berrocal and he works on other babies and children with PFV/ smaller eyes so he knows how to handle the situation and knows what we need. We called around locally and most ocularists don’t deal with babies so we feel lucky we found him in Miami.

Unfortunately he does not accept insurance, and these eyes are created by hand, costing us $6,000 per eye that he will need. These will have to be upsized as he grows so possibly every 6 months in the beginning, to hopefully just once a year down the road.

It would mean more than the world to us if we can reach this goal and help them out. They’re working so very hard to support their child and would be greatly appreciative of any donations!

All donations will directly go to the family to help with past and future medical bills

to ensure Luka has the full medical care he needs to not let this condition affect him in any way shape or form.

I have a video on tik tok @foreverdida explaining more on the situation. thank you !