8. Kristen Gray has a score to settle with Batten Disease

Kristen Gray left her job to be a stay at home mom with her two young girls. In 2015, Charlotte (4) and Gwenyth (2) were diagnosed with Batten disease: a fatal disorder that would leave them blind and unable to walk, play or speak. Kristen and her husband were unwilling to accept this fate. With a breathtaking swell of love and support, they raised millions of dollars to fund the first clinical trial and real hope for a cure. Her story is a testament to the power of love (and not taking no for an answer.)   In Today’s Episode: A mother’s intuition and stopping at nothing for answers (3:37) The day her 4 year old daughter, Gwenyth, receives the fatal diagnosis (12:23) The call that her youngest daughter, Charlotte, shares the same diagnosis (15:26) A family In search of life saving treatments and hope (31:03) Charlotte and Gwen’s results after the first ever clinical trial (32:17) A mom on a mission builds a school for her daughter and other families as they search  for some sense of normalcy and moments of joy and connection (35:07)   Wise Words: “They shut the door and he said, “Your daughter Charlotte has Batten Disease CLN6.  It’s a neurodegenerative brain disease. It’s rare. It’s fatal and there is no cure.  We know one other child that has this diagnosis in India.” He slapped down a pamphlet that gave us more information about the disease and said, “Prepare your home for wheelchairs and kiss your daughter every day.”  Then he said, “By the way, your younger daughter has a 25% chance of having the same diagnosis.” (12:23) “You could go one of two ways, you either bond together and just fight this fight together and support each other or, you grow apart and you both carry on in your own experiences in whatever way that is.” (16:42) “I don’t think Gordon and I ever allowed ourselves to think this was going to be a terminal thing for our girls.  We decided to carry the mindset that we were going to fight this and we were going to overcome it.” (17:19) “You definitely learn to appreciate the small things in life and take each day as a blessing with gratitude.  Everyday, Gordon and I would wake up and wonder what condition Charlotte would be in. Is she going to get out of bed and is she going to walk or is she going to get out of bed and fall.  We really lived each moment as it came and really celebrated the little things that were happening each day.” (20:30)   Links Mentioned: www.curebatten.org www.thegrayacademy.org See acast.com/privacy for privacy and opt-out information. Advertising Inquiries: https://redcircle.com/brands Privacy & Opt-Out: https://redcircle.com/privacy