This is Ella's Chance
Ella is 8 years old. She turns 9 this May. Ella has had a very complicated medical journey the last 4 years and her case is very rare and complex.
Ella has a very rare degenerative Motor Neuropathy/Neuromuscular disease.
Ella now needs a wheelchair or walker to get around and we installed a stairlift in our house, so she can get upstairs. Her upper extremities and core muscles are also starting to show more weakness as time goes on.
As Ella becomes weaker her needs increase. She relies on us for most of her daily needs such as getting dressed, the bathroom, getting off the floor and emotional support. We have tried to make our house comfortable and accessible for Ella so she can remain independent.
She loves cooking and baking, horseback riding, piano, arts and crafts, swimming and sit-skiing.
We would like an adaptive bike for our daughter so we can go for bike rides as a family and keep Ella as active as possible.
Ella is a very determined little girl but this has certainly affected her emotionally in many ways as she remembers being able to run around with her friends a short time ago. She doesn’t understand why this is happening to her. We continue as a family to encourage her and love and support her in every way!
We are learning to adapt to our new normal as a family and give her the best life we can. She is an amazing little girl!
Thank you for your support!