Help Elena, a deafblind child, and her family

Help give Elena a chance to hear and access to needed therapies.

Procedures that could give Elena the opportunity to one day hear her parents’ voice are not available or covered for children like Elena here and are very costly. On top of that, the window for meaningful impact is closing fast as these types of treatments have a higher chance of success when done as early as possible in a child’s life. 

Imagine for a second being unable to hear or see the ones you love, and knowing there may be something that could help and change your world, but not being able to get it. That is the heartbreaking situation we as her parents find ourselves in. 

Elena has no real way to communicate with the world and people around her, to feel connected, to learn and grow. This impacts her development and her mental health.

Check out Elena's story which was featured on Global News:
https://globalnews.ca/news/7725838/ajax-ont-family-raising-awareness-of-rare-disorder/

Elena was diagnosed with a rare syndrome called CHARGE at birth on January 13, 2018. She is deaf, legally blind, can’t taste or smell, and cannot walk on her own. Being able to provide this chance to Elena would be life changing and have an immeasurable impact on her life, especially given that Elena also lives with multiple other disabilities and challenges:

- Heart defects
- Delayed development (hypoplastic pons)
- Facial nerve damage (facial palsy)
- Breathing difficulties (choanal stenosis)
- Limited ability to walk (missing balance nerves)
- Episodes of severe vomiting (cyclic vomiting syndrome)
- Sleep difficulties
- Teeth-grinding (bruxism)
- Poor muscle tone (hypotonia)
- Intellectual disability
- Swallowing difficulties (cranial nerve abnormalities)

There are technologies that can help Elena grow up to enjoy life to the fullest and we are actively looking into new products and procedures across Canada, US and Europe. 

One such procedure is called the Auditory Brainstem Implant, which is not offered to children in Canada and we wish to explore. This may give Elena the gift of sound and ability to hear music one day. 

Early intervention can greatly improve Elena’s quality of life, but unfortunately most of these treatments as well as medical equipment and some medications are NOT covered by our healthcare system or insurance.

If you are able to donate, even a little, we are eternally grateful. Even if you are not able to contribute financially, I hope you will consider sharing this page on your social media, with friends, family and networks. Every share brings us one step closer to reaching someone who could help.

Check out Elena’s story and follow her journey:
https://www.elenafosterjourney.com

To learn more about CHARGE Syndrome: 
https://www.chargesyndrome.org/about-charge/overview/

Thank you,

Andreea & Ron