Morgan

13 Nov Morgan

PROCEEDS FROM EVERY PURCHASE OF ANY GREY PEB SWEATSHIRT OR T SHIRT WILL BE DONATED TO SATB2 foundation.

Morgan’s journey has not been the same as any other other three year old. She was born with a cleft palette, needed braces to walk, is unable to talk, and has developmental delays. After a brain and spine mri, an eeg, and other things along the way they diagnosed her with cerebral palsy. In June we saw Dr. Saul and he said i know Morgan’s had a few specific genetics test, but I think this could be something more than CP. So they took Morgan’s DNA along with Willis and myself.

So we waited for a few months and honestly i didn’t think much of it because all of our other genetics tests came back negative. Early September i was driving home from work and got a call from Cincinnati Children’s and it wasn’t out of the ordinary because i get calls from them all the time. I mean i have the number memorized. She said this is Paige the genetics counselor do you have time to review Morgan’s results. Of course i said yes and she said Morgan has SATB2 also known as Glass syndrome. I said okay well what does that mean. She said we don’t know a lot about it because their are only 150 cases in the world. I remember thinking only 150 cases and my little Morgan is one of them. How can this be?

She said she would email me information and we would schedule an in person appointment. I pulled up to the daycare to pick Morgan up and just sobbed in the car by myself. I felt like every time we got two steps forward we went ten steps back.

That night i just had tears rolling down my eyes the entire night. Then strong mama mode kicked in and i began researching in the middle of the night about this syndrome. I found the only doctor that specializes in this rare disorder is Dr. Zurate in Little Rock, Arkansas. I thought to myself I have never been to Arkansas but I am going. The next day i reached out to the genetics counselor in Arkansas and she said she could get us in June 2021. I was somewhat defeated but I knew she would eventually be seen.

Fast forward to middle of October and i got a call from Katie and she said we had a last minute cancellation for November and I knew you were really motivated. I said we will be there! I powered through the first five weeks of Morgan’s diagnosis and then it all hit me. I have been pretty emotional the last few weeks and it is just because i simply want the best for our sweet angel.

Morgan’s smile will light up a room and she will instantly steal your heart. We will continue to focus on what Morgan needs and not just think of this as Morgan’s diagnosis. It all makes sense now, God chose us to be Morgan’s parents because he knew we would be able to provide for her and get her the help she needs. We will always be her advocate and do everything we can to make sure that Morgan has the best life!

I know that Morgan has so much to tell us but her way of communicating just looks a little different. She speaks with her heart, her hands, and her smile! She loves her family to pieces (especially her big sis) and it shows!

Love,
Morgan’s mommy

Morgan is the Daughter of Molly & Willis Edwards, sister of Mallory Edwards. Granddaughter of Vinnie Edwards & Doug and Diane Bonifas.
Niece of Nikki Bonifas, Betsy Bonifas, Brady & Megan Bonifas, Talon & Bailie(Bonifas) Parker & Justin Mitchell.

Learn more about SATB2 here.