Their Bravery, Their Battle To Live & Fight For CLN2 Batten's Children
Sharing their lives to help others affected by Batten's Disease CLN2
Partnerships in accessing mobility equipment & assistive
What is - Their Hope To Live Foundation
The Mission
At TheirHopeToLive.org, Our mission is to empower individuals with Batten's Diease CLN2 -disabilities through innovative assistive technology solutions. We are committed to enhancing quality of life by providing accessible equipment and inclusive technology that promotes independence, fosters communication, and removes barriers to participation in all aspects of life. Through collaboration, education, and advocacy, we strive to create a world where every CLN2 patient, regardless of their abilities, can reach their full potential and live with dignity and equality."
Our History
Founded in 2024 but striving since 2019, We are two parents navigating this Terminal Neurological Rare Brain disease. Life x2, TheirHopeToLive.org has been working tirelessly in an advocacy space as Our own Two Kids, Malachi and Maleea, were the first rare Batten's disease siblings in Washington to be diagnosed just as the pandemic hit the US in 2019 at Seattle Children's Hospital.
Team
Our team is made up of dedicated individuals who are passionate about making a difference in the rare disease space. From our volunteers to our board members, everyone at TheirHopeToLive.org is committed to our mission and the families we serve.
Video
The reality of Batten's Diease CLN2
Feeding Tube Changing
Living The Rare disease Life
Medicine prep, before Brain infusions
The reality of Batten's Disease CLN2
Our life is FAR from normal especially when you have TWO on a feeding tube, and travel is a whole other level of packing, but you have a work meeting you need to attend. The balance or work & taking care of complex patients is a delicant dance
Website under construction
Donation via Paypal, GFM, Check out our site soon we will be a 501c3