Meet Ella
Meet Ella!
A very strong girl with a special dream come true!
Meet Ella!
Ella has STXBP1, but there is so much more to know about her. Ella is a lovely, happy, and loving 9 year old girl. She loves to make friends, and has a soft spot for babies and dogs. She can’t pass by anyone who is crying unless she stops to comfort them, especially a crying baby.
Ella doesn’t speak, but instead she communicates by using her iPad and AAC software, pointing, and vocalizing or taking you directly to what she wants. She attends Third Grade with full-time support and loves school.
Ella walks unassisted, but does have an ataxic gait. She would much rather run or jump than walk, and loves to move at a fast pace. She can climb stairs on her own with supervision, and is getting very good at walking down on her own too.
Ella has seizures. So far they have typically only occurred associated with sleep— either when she is falling asleep, during sleep, or immediately upon waking.
Ella loves water and swimming. She loves buses, and excavators, and airplanes, and anything with wheels. She likes to read books. She loves swinging on the swings. Like many other kids she loves hanging out with her friends at school, listening to music, and anything to do with the movie Frozen.
It is estimated that there are only 250 people in the world with STX mutations, and Ella is one of them. The truth is, there is so little research that we don’t really know what this will mean for her.
Ella’s Dream Come True
Ella’s dream is simple - she wants to meet other kids just like her. Kids who are living with an STX disorder and face the same day to day challenges that she does.
From January to May 2018, WPG Cycle ran a series of fundraising to help make Dream Kid Ella’s dream into reality. Fundraising initiatives included weekly “Donate Dominate” charity rides as well as a “WPG’S Got Talent” variety show featuring local musicians and comedians at Jekyll & Hyde’s. There were over 150 people in attendance and the show was incredible!
We are so blown away at the generosity that WPG Cycle community has shown to The Dream Factory this year. Together they raised over $11,000 - making Ella’s dream come true and giving her and her family the experience of a lifetime.
In May of 2018, Ella and her family travelled to Florida to participate in a meet and greet for children with STX and their parents - the first of it’s kind. They also made a trip to Disney World is also in the works, of course!
WPG Cycle, your support connected Ella to a community where she and her family will be able to find answers, friendships, and most importantly - hope.
Thank you so much for helping make Ella’s dream come true!