Ella is a four-year-old girl living in Squamish, British Columbia. She has a rare gene abnormality in KCNQ2, which creates a little known form of epilepsy. You would never know Ella was four to look at her, because her condition gives her the appearance of a two-year-old. Ella’s condition disrupts her overall development. This means that her physical abilities, and cognitive development are delayed. In order to live life with some independence, Ella requires the assistance of occupational therapists, physiotherapists, eye surgeries, and several other specialty treatments.
Given her condition, Ella is considered unique. No one else in the world presents with her condition in the way she does. Doctors are interested in researching her case, but unfortunately have very little practical advice as to how to help her. Ella didn’t even have her diagnosis until her family saved their money to have private genetic testing done.
She’s on the cusp of being a person who needs care for the rest of her life. Most people with her condition do. Many kids who have Ella’s condition can’t stand or walk, but she can.
There’s a lot of love in Ella’s family. Dad works full time during the day, and mom works part-time on evenings and weekends so as to be able to give Ella the benefit of their fulltime care. Her family moved from New Zealand, and therefore it is just mom and dad at home, with no outside family help.
Everyone is pulling for Ella to have future happiness and independence in the face of more than the usual amount of delays. Her mom and dad are doing their best, but going forward Ella will need a great deal of support from her community. When Ella’s mom approached us in March 2017, at one of our fundraising events, we knew that Neurological Wellness Association could play a big role helping Ella get the care she needs. Currently Ella is responding well to cranial sacral therapy, chiropractic treatments, and cold laser therapy. Previously she was benefitting from music therapy, but these treatments had to stop due to Ella’s family’s financial constraints.
Imagine what someone like Ella could do with more support! With donations that accumulate to $1000.00/month Ella will be able to increase the amount of therapy she receives, and make gains in her abilities. With extra support we can help her enter music therapy again. Further funding will also help Ella to receive a brain scan and assessment sooner, which may help diagnose underlying autism, and allow her to access treatments that address her cognitive needs. Let’s help Ella grow up with as much independence as possible.