Help Emma Walk with the Trexo Robotics

Emma’s Journey

Emma, born in June 2019, was a happy and healthy baby. As she started nearing her 1st birthday we noticed she had fallen behind in her milestones. We immediately self referred her to early intervention to try and help catch her up to her peers. At her 1 year check up, her paediatrician agreed that something wasn’t right and was also concerned about the lack of awareness to her environment. That is when our medical/disability journey started. After countless specialist visits, tests and procedures we finally figured out that Emma had optic nerve atrophy from her MRI findings. There was no clear reason why, which led us to genetic testing. 8 months later we got the most devastating results that Emma had an ultra rare genetic disease called KAND (Kif1a associated neurological disorder).

What is KAND?

With only roughly 500 people diagnosed worldwide, KAND is a progressive/neurodegenerative disease. Caused by mutations within the Kif1a gene that leads to a number of symptoms and neurological disorders such as Ataxia, apraxia, hypotonia, global development delay, optic nerve atrophy, cortical vision impairment, epilepsy and many others.

KAND has impacted Emma in many ways. At almost 5 years old, it has already caused significant damage to her developing brain causing her to be blind, non verbal, non mobile and more recently epileptic.

Emma has spent most of her life doing immense amounts of therapy. We have spent significant amounts of money trying to give her the best chance to thrive while hoping to prevent any regressions. We even moved provinces to give her the best resources available in Canada for children like her. If you’d like to know more about our journey you can watch an interview I did with Inside Edition recently

https://www.insideedition.com/mother-of-4-year-old-living-with-kand-one-of-the-rarest-disorders-in-the-world-advocates-to-find-a?amp

or check out Emma’s instagram page @thelifeofemmabean

About our fundraiser

As some of you know, Emma is in the process of completing a Trexo trial through her school and has been loving every minute of it. Seeing her standing upright, walking around is the most incredible feeling. The Trexo will give Emma not only a sense of independence, but will improve her quality of life.

The Trexo has numerous benefits for non ambulatory children such as increased bone, joint and muscle strength, functional stretching, core/trunk strengthening, body awareness, improved body alignment, better coordination, increased endurance, and improved sleep.

We are hopeful that adding the Trexo to Emma’s daily routine will benefit her in many ways and continue to make her a strong happy girl.

Starting this fundraiser has pushed us out of our comfort zone but unfortunately due to the significant price tag of $50,000+ for the Trexo, we are hoping for a bit of help. We have never been comfortable asking or accepting personal help previously because we have always been able to provide the best of the best to Emma ourselves. Since Emma was diagnosed we have been blown away by the generosity of family, friends and even strangers in supporting us in our efforts to raise money for the Kif1a organization. And incredibly grateful for many others that have gone above and beyond to help pay for some of Emma’s therapies. We know that this is a lot to ask on top of all of that and in no way want anyone to feel obligated to help!

Any Donation amount gets you entered to win a Prize donated by Fairmont Château Whistler worth over $2000!!!!!! Draw date TBD, winner will be contacted through here