About a year ago I got an email from a woman asking about the church. Holly and her family were interested in finding a church home and she and her husband Jeff wanted to have their two little ones baptized. I stopped by their house one night to chat and had the privilege of meeting their two children, Bella and Zachary. Bella has Rett Syndrome, which is a rare neurodevelopmental disorder that affects mostly girls. There really is no easy way to explain Retts – it’s kind of a combination of autism/epilepsy/anxiety that also affects motor and verbal skills and the girls’ gastrointestinal and immune systems.
From the second I met her, Bella absolutely captured my heart. She has a heart and spirit of determination and love. She has to face obstacles every day, but never ceases to amaze me as she fights to overcome them.
On Saturday Bruce and I attended the Rett Syndrome Stair Climb in Boston. It is a world wide event where girls and their families walk up the stairs of a building in their local city, symbolizing the steep obstacles they climb up and over throughout their lives. Members of the Rehoboth Fire Department traveled with us to the event (Jeff is a member of the department) to help the families with the girls who aren’t quite able to walk themselves. It was an incredible day!
Zachary – those eyes!
Mother & Daughter.
Daddy’s little girl.
Zachary chatting with his dad before the walk began. Zach just wanted to make sure everyone was in the right place, ha! (SOMEONE has to take charge!)
I just can’t with this kid. He is too much!
They let Zach announce his sister’s name – so cool!
We were all sobbing. She made it to the top without having anyone carry her – the first year she’s been able to do it!
Thank you, Jeff & Holly, for inviting us to be part of an amazing event! Bella gave us a little scare and ended up in ICU at the beginning of last week, so it was extra special to be with her at the walk on Saturday and then have her in church on Sunday.
<3 to all the Rett Angels and their families!