Gosh, where to start? I suppose I should start with introducing this adorable little girl.
Meet Miss Sawyer Rose, my incredible 6 year old niece. This girl is pretty amazing, if I do say so myself. She is a social butterfly, who has never met someone who didn't instantly fall in love with her. She just has that personality.
So what is BPES and what does it have to do with the beautiful little girl above? Well, let's just say I will forever call it BPES and not its full name because my tongue cannot spit it all out. BPES stands for Blepharophimosis Ptosis Epicanthus Inversus Syndrome. There are two types of BPES. Type 1 is found in women only. It effects the ovaries and the eyes. Typically, the women with BPES, Type 1, go into early menopause (we have seen as early as age 18). Type 2 is found in both men and women and only effects the eyes. She has what appears to be smaller eyes (though they are the same size as ours, the ptosis and extra fold give her the look of smaller eyes), the severe ptosis, and she has an extra fold of skin in the inner corners of her eyes which prevents her eyes from opening as wide as they should be able to. All can be mostly corrected with surgery.
Surgery was exactly what they did. When Sawyer was 3 months old she went in for her first surgery. This first surgery was to correct the severe ptosis, aka "droopy eye syndrome". With ptosis, the muscle that opens and closes the eye lid doesn't function properly, so she was unable to lift her eyelids hardly at all. She was using her muscles in her eyebrows to lift her eye lids. In this surgery they placed "slings", which they placed something similar to fishing line starting at her eyebrow, looped through the eyelid and then back up in order to give her more control over her eyelids, thus being able to open and close them more. Surgery went great! After about a week the swelling went down and her personality bloomed. It hasn't stopped growing since. Sawyer has since undergone 2 more surgeries, one sling adjustment and one to open up the extra fold of skin in her inner corner of her eyes.
She came through all surgeries like a champ. Not a single thing that has been thrown at this sweet girl has slowed her down. She is thriving in school and is keeping her parent running around between sports activities and dance.
She also has a big obsession with crafting currently. I knew she would be the best person to help me curate this collection. So everything you see started with a phone call brainstorming session with said 6 year old, then approval of all designs along the way! I had so much fun doing this and I hope that it brings at least a little awareness to BPES and allow me to financially make a little difference for this cause.
Leave a comment below if you have any questions and I will try to answer them or I will ask Sawyer or her parents for answers. We are all still learning too and would love to help you learn as much as possible too!!
Here is the link to my (old) blog post from when Sawyer had her first surgery if you want to read more about it:
https://pharmwifefarmlife.blogspot.com/2016/02/sweet-sawyer-rose.html
