Hi everyone, thanks for taking some time to learn about what is going on with Forest (Lily). We are asking for financial support for Forest’s eye muscle revision surgery on both eyes on July 1st.
Background:
In 2022, Forest’s right eye spontaneously turned inward after using some virtual reality goggles. We learned that she had what appeared to be esotropia (a form of strabismus, eye turns inward). She was given a mild prescription and we were told since it was intermittent it was probably related to eye fatigue and that we should monitor.
Over the next two years her eyes were mostly aligned and if her eye did turn inward, she would go to bed and wake up with aligned eyes again. We did notice that every so often the left eye would turn inward as well.
Then in January 2024, her eye turned and has been turned in 98% of the time since. We saw ophthalmologists and a developmental optometrist.
The ophthalmologists were in agreement that the best course of action was surgery, based on the severity of the turn, the likelihood that she had been self-regulating the eye turn for a long time and over time that ability to keep the eyes aligned diminishes.
The developmental optometrist diagnosed her with Binocular Vision Disorder (BVD). BVD impacts your whole vision processing skills. Fortunately for Forest her eyes turn came at the end of vision development, so she had learned all the necessary vision skills, but was losing them over time. She has lost 40% of her depth perception, her processing rate for taking in visual information is at 68 (normal vision information processing speed is at 4); which accounts for why reading and keeping up in class when learning information is very difficult for her.
The developmental optometrist recommended vision therapy. Vision therapy has a lot of anecdotal evidence to support it but no clinical studies that show an improvement for esotropia. There are clinical studies that demonstrate improvement for other types of strabismus and BVD.
We did vision therapy for the last year and we saw mild improvement with her vision skills. However, there has not been improvement to her eye turn.
The impact:
If you know Forest you might describe her as a fun-loving extrovert. We have always been so impressed with her courageous spirit, unapologetic authenticity, and confidence. Over the last year we have seen her withdraw, she is self-conscious, struggling in classes she has always gravitated towards, and doesn’t want her picture taken. As a pre-teen, you can imagine how being visible different in this way is socially, emotionally, and mentally is taxing for her.
Current Status:
We have decided to move forward with surgery. Forest wants the surgery and while we as parents are nervous, agree that this is the best option for her.
Forest is scheduled on July 1st for an eye muscle revision surgery on both eyes. It is an in-and-out procedure where she will be sedated and then go home that day.
This surgery for Forest’s circumstances has an 85% success rate, with only 15% of similar cases having complications or needing an additional surgery.
The likely and hopeful outcome is that Forest’s eyes will be aligned and her BVD will no longer be present. According to our surgeon, Dr. Gappy from Kellogg Eye Center, she should regain all of her depth perception and her eyes will act as a team again.
The Ask:
We are asking our community to help us meet our healthcare deductible, $7,000 out-of-pocket.
We do not have room in our budget to have this surgery and not go into debt. We are still paying off her broken tibia from this past September. The financial burden of this surgery may mean that Forest won’t be able to join her hockey team again this Fall, which will be devastating for her.
Additionally, there is a real risk that Sarah will lose her job before the end of the year. As many of you know, Sarah works with the Federal government through a Fellowship and anticipates the fellowship to end as early as end of September. Her position could be eliminated at any time, as all agreements are in process of review and limited agreements are being extended or renewed.
Our family is just one of many struggling to stay above water right now. We appreciate the time you have taken to learn about our need and any support you may be able to provide.
