Blakely S.

The wonderful world of Blakely

October 28, 2017

Since we first met Blakely back in March, SO much has happened! Blakely’s mom Kelly sent us a great big update on what’s been happening in their world.

First up: the playscape purchased with her Chive Charities grant – When it was delivered, 12 HUGE boxes on two separate pallets, I thought to myself, this will never be completed!! My husband and dad worked on this for two weekends, non-stop, and came through for her. She loves playing on it and can now swing in the big swing on her own.    


April: Blakely played t-ball for the first time ever and let me tell you, SHE WAS A ROCK STAR! Our recreational park hosts this special league twice a year and our community really gets involved.  There are different ages on the teams, however, each player has a helper with them at all times. Blakely’s’ siblings even got involved; which was amazing!   

May: Blakely started wearing glasses! She found the exact glasses that she wanted and they're PURPLE!! She loves wearing them, maybe because she can now see, and she looks adorable in them. 

June: Family vacation to Universal Studios in Orlando, and once again Blakely is the center of attention. And did I mention, she is a dare devil too? She's not afraid of anything and wanted to ride even the big roller coasters!! (Which. she couldn’t of course.) We took her adaptive stroller with us and we couldn’t keep her in it – she wanted us to carry her so that she could see everything! After two days of that, we made her sit in it.  

July: Blakely rode on her first airplane EVER!! Blakely, Mom, and Granny flew to Arizona to attend the Joubert Syndrome Conference, which was our first conference. We had the opportunity to meet other families from all over the world that have been affected as well. We were able to attend numerous classes that taught us more than we could’ve ever imagined.  

All fun things (summer) must come to an end and it did! August came and it was SCHOOL TIME again! Thankfully, Blakely loves her class and teachers so she doesn’t mind going. Unfortunately, she fractured the top of her foot and had to get a cast on the day BEFORE school started. She wanted a pink cast, so that’s what she got. She had to keep all of her weight off it for 3 weeks, so once again, her stroller came to the rescue!

Blakely turned 5 on September 24th and had a Peppa Pig party and cake. She was able to even blow out her candles this year, major improvement from years before.  

October: Blakely had her second eye surgery and is recovering very well. Her eye started turning inward again and her doctor wanted to correct sooner than later. We traveled to Dothan, Alabama where the surgery took place, and she was released the same day. Did I mention she is the strongest little girl I know? We just went to our town festival and all the kids were able to ride rides and have a blast. Now we are getting ready for Halloween and Blakely is dressing up as her favorite thing ever, Peppa Pig!! She is going to be the cutest pig in this entire world!! 

Thank you again to all of the donors that make the impossible become possible! We are truly blessed.

-Kelly Sweatt, mom