Nova's BPES Surgery

Hi Everyone,

My name is Tegan and I am helping to fundraise for my little niece, Nova, on behalf of Nova's Mum and Dad, Victoria and Troy.

Nova was born at 37+6 weeks. It was a dangerous labour that resulted in an emergency C-section. At the beginning, everything appeared fine with Nova and everyone was overjoyed to finally meet her. When Nova was about a week old, we noticed that she was yet to open her eyes. Most parents would know that while unusual, it didn't necessarily mean anything was wrong. When Nova was just over a month old and still hadn't really opened her eyes properly, she had her first pediatric ophthalmologist appointment on the 23rd of December 2022. It was at this appointment that Victoria and Troy learned that Nova was born with a condition called Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome - BPES for short.

Typical characteristics of BPES are narrow eyes, droopy eyelids, an upward skin fold in the inner corner of the eyes, widely set eyes and a flattening of the nasal bridge. BPES also means that Nova has little to no eyelid muscles to be able to open and close her eyes as the rest of us would.

There are two types. One only affects the eyes and the other causes Premature Ovarian Insufficiency (POI). They are yet to find out if Nova has type 1 or type 2. The chances of being born with BPES are 1/50,000 and happens at random.

Treatment options for BPES are extremely limited, particularly in Australia. The option here in Australia is a silicone sling used to pull the eyelid open and attaches just above the eyebrow. It does not correct the BPES and is likely to need replacing in as little as every 2 years, potentially sooner if they snap, which is unfortunately quite common.

Unfortunately, because BPES causes such a narrowed eye, Nova's vision has to be monitored. Children with BPES have the potential for their eyes to deteriorate if their eyes aren't exposed to enough light. While this happens normally for those without BPES, with their eyes naturally being open enough, it is nearly impossible to make sure Nova's eyes get enough light, without an operation. She is also at risk of getting permanent Amblyopia, or lazy eye if her eyes aren't corrected early enough.

Another potential complication from BPES is that as Nova grows she will tilt her head back or lean back all the time so she can see more when she spends more time upright, which is a compensation that children with BPES often do. This itself then creates the added risk of Nova growing up with spinal issues. This makes the goal to have the corrective surgery between 12-18 months as recommended by the Ophthalmologist, as she spends less time laying down ( as chilren in infancy lay down most of the time and when laying down they look down/out the bottom of their eyes, which is the only way a person without corrected BPES can see).

This means she could need the surgery as early as November 2023 if her eyesight is struggling or she starts leaning back all the time, giving herself a greater risk of developing those spinal issues.

NDIS does not cover any international surgery, even if it is a better and less frequent surgery option that is not offered in Australia.

Like several Australian families with children with BPES, Victoria and Troy became aware of a surgeon in Malaga, Spain, by the name of Dr Ramon Medel. He has become the leading surgeon in the world for treating cases of BPEs, having performed the largest amount and most successful life-changing surgeries on other people/children with BPES. Dr Medel's approach is less invasive long term and provides those with BPES the results that are corrective and effective. Not to mention, long-term fixes. Unlike the surgery offered here in Australia, Dr Medel can do 2 surgeries at once. He will lift Nova's eyelids using part of her forehead muscle, instead of a silicone sling and will also surgically correct the inner fold.

The surgery then grows with children, but is typically curative, with only a potential revision in her teenage years.

Victoria and Troy will need to take Nova to Malaga, Spain a week before her appointment.

The cost of the surgery alone is approximately $32,000 AUD. In addition to flights, accommodation (also being required to stay in Malaga for at least 2 weeks following the surgery), time off work, and bills at home while away, they have asked me to help.

All funds that are left over after Nova's treatment, will be donated in full to another family fundraising for BPES treatment or another charity for children if none are fundraising at that time.

If you can assist in any way to get this smiley, joyful little girl the surgery that would improve the quality of her life, please do. If you are not in a position to do so, even sharing this GoFundMe would be amazing.

Thank you so much for any help, no matter great or small!