Suki Foundation hosts “Raise the Roof for Rett” event October 28th

suki-foundation-raise-the-roof-for-rett

BIRMINGHAM, Ala. (WIAT) – Soon after Sarah Katherine Bateh was born, her mother gave her the nickname Suki.

“We really don’t know where the name Suki came from. One day that came out and it kind of stuck. So now she’s Suki,” Marie Bateh said.

Suki was born the fourth of five girls for Brian and Marie. As parents to three girls before, they had expectations for her development.

“I noticed when she was about eight or nine months old that her muscle tone was really low and she wasn’t bearing weight on her feet like my other kids did,” said Marie.

That’s when she turned to Children’s of Alabama for help. An early test for Rett Syndrome came back negative. Still, Marie pressed for answers. They decided to have Suki undergo a neurological test, which came back positive. Early diagnosis and intervention therapy helped Suki improve her abilities.

“The simple fact that she’s able to walk and continuing that ability is a huge step in the right direction. However, Suki used to be able to feed herself and pick up things off a tray, and she’s lost that ability. But, it’s one of those things where you take the good with the bad,” Brian said.

The Bateh family felt called to help others navigate the challenges of having a child with Rett. They are also determined to help find a cure. So, they created the Suki Foundation. The non-profit organization benefits Children’s of Alabama and UAB’s world-renowned Rett Specialist, Dr. Alan Percy. It is important to the Batehs that money donated to the foundation stays local.

“We have a great opportunity to raise a lot of money. UAB has put two matches in place. The first match is $500,000 towards clinical, and the other $500,000 is toward research. So we have a goal of raising a million dollars and to [turn it into] two million dollars,” Brian said.

By attending Raise the Roof for Rett on October 28th at Haven, you will have an opportunity to support the foundation in a fun way.

“[The event is] fun. It’s entertaining. There’s dancing. There’re beverages. There’s dinner. There are silent and live auctions. It’s got a little bit for everybody. So it’s one of those events where you can show up at the door, and I think you’ll be pleasantly surprised how much fun you’re going to have,” said Brian.

“We just really believe that a cure is out there and we are just working toward funding research so that a cure is made possible in our lifetime. We want to see [Suki] be a typical little girl who can talk and play and walk and use her hands. So in the meantime, we’ll support families and doctors and teachers,” Marie said.

Ticket prices are $65 for individuals and $120 per couple. Corporate tables and sponsorships are also still available. Ticket price includes dinner, desserts, beer, wine and live entertainment.  Click here to reserve your ticket/table today.

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