On July 31st, 2013, Isla Rose was diagnosed with Leber's Congenital Amaurosis (LCA). The day we learned our baby girl was blind. And basically the retinal specialist informed us that there was no cure but a lot of options and research that could be done. It's hard to describe that particular day and moment in our lives but it is a day we will never forget.
LCA is a rare inherited eye disease that appears at birth or in the first few months of life, a rare retinal disease that causes infant blindness, and it affects around 1 in 80,000 of the population. YEP, that rare!!
How did we know or what signs did we see? Isla is now 3 months old an at her last checkup, we brought up a concern we had to her pediatrician that we felt she wasn't tracking, and that during play time she didn't focus on anything, not even our faces. I, particularly, starting noticing more around two months because when I was nursing her I felt like she never "looked" at me. So, our pediatrician thought it would be a good idea to get her referred out to two different Pediatric Opthomologists here in Charlotte, NC.
As parents, it is so painful to see our beautiful baby going through this. Raising a blind child will be different, but we can't say it's difficult -- not yet. Isla inspires me to be a better person every day. I am now more protective over her than ever. She lifts my soul, amazes me and I fall in love with her harder each day. We are absolutely blessed to have her here and she has been sent for a purpose in mine and Douglas' life.
My prayers, my hope, is that one day Isla Rose will admire with her eyes, all the beauty in this world and be able to see. I've begged God and asked him to please let her see but I have to remember that He has a plan for her.
And the story continues today...
Over the past year, Isla's vision has changed some. She continues to use her white cane about 50 percent of the time and wears her glasses now about 80 percent of the time. The past few updates I have given on her vision have been little to no change but at her last eye exam back in December her doctor decided to change her prescription to increase the magnification a little.
That is when we decided to give our friends over at Jonas Paul Eyewear a try.
I just knew in my heart that changing up Isla's glasses to a pair from JPE was going to be a game changer for us.
When I told her it was time to pick a new pair of glasses, she got really excited about the whole process and the options she had to choose from. She loved that she could choose different styles and colors. She ended up choosing the Paige Blush in the soft matte pink. They fit her face and complexion perfectly.
I have been "friends" with Laura via social media since finding out about Isla's diagnosis. She was one of the VERY first people I had reached out to and started following on my social media platforms. It was stories like Jonas' that made me feel like Isla was not alone and that other families were going through similar situations like ours. You can read about when we first learned about Isla's eyes here.
Why We Chose and Love Jonas Paul Eyewear?
We love the story behind Jonas Paul Eyewear for many reasons. One of them would be because of the support it shows to Laura, Ben and their sweet Jonas. The other reason would be because of the mission and heart behind it all. For every pair of Jonas Paul Eyewear kids glasses purchased, they make a donation to the various partners to provide eye tests, corrective children's glasses, cataract surgeries, mectizan treatments to prevent blindness, and Vitamin A supplements to children and families in need. These donations provide support for visually impaired children all over the world.
Isla has gained a lot confidence since wearing her Jonas Paul Eyewear. We noticed the biggest difference when she started preschool last Fall. She was able to complete class activities because the glasses kept her from wanting to press her eye and hold her eye shut. They also help decrease her nystagmus which allows her eyes to rest at ease more as well as give her the confidence to do more while using her white cane. A few weeks ago, JPE launched a few new frames and colors which Isla has already chosen from so that she can have an extra pair to switch out here and there. She's pretty excited about them and we can't wait to share with you what she chose.
If you're unsure about what frames to get your little one, they have a really neat home try on program option that makes it super easy and convenient for you and your little one right in the comfort of your own home. Pretty neat, right?
I hope you found this post helpful and if you know anyone that has little ones in search of eye glasses, we highly recommend Jonas Paul Eyewear. It has truly been a wonderful experience for us and our Isla Rose. If you have any questions, feel free to reach out anytime.
Try up to 7 pairs for 7 days at home, risk-free - for just $7.
