Update: Vivian passed away March 6th, 2020. Please send prayers to her family and donate for a cure.
We want to introduce our first featured DIPG warrior, Vivian. Vivian Rose Weaver has been battling DIPG since February 1st, 2018. Her parents, Katie and Simon Weaver, and her younger sister Lucie fight tirelessly by her side.
Katie and Simon were some of the first people in the DIPG community that reached out to Casey and Jeff upon Dylan’s diagnosis, which we appreciate so much. There was an instant bond since they also live in Washington, and Vivian and Dylan are close in age.
Click here to read Vivian’s story. Katie and Simon established the Vivian Rose Weaver Defeat DIPG Foundation, which is a chapter of the Michael Mosier Defeat DIPG Foundation. While Katie and Simon have been working hard and praying for Vivian, they also knew they wanted to take action to help find a cure for DIPG. They have already raised over 1.3 million dollars since Vivian was diagnosed. We are so thankful that they have chosen to put so much effort into the DIPG community for research and the search for a cure, even while they are in the thick of the fight with their own daughter. Please also watch and share this video, which the Weavers participated in to raise awareness for DIPG.
Vivian’s father Simon recently shared this update:
February 1st marked the two year anniversary of Vivian’s DIPG diagnosis. I remember being informed that day in 2018 it was unlikely Vivian would live to the end of the year. Yet here we are, two years later, celebrating the passage of another year and grateful for the life we’ve shared with Viv during that time. Though there have been periods of relative stability in those two years the last few months have seen an acceleration of symptoms that belie her tumor’s progression.
Vivian has not walked in months, she has not spoken in that same timeframe, and she’s no longer able to move her extremities, to use her hands, to hold her head up, to swallow anything but very small soft foods and thickened liquids. We primarily feed her thickened liquids with a syringe. Lifting her is like lifting a wet noodle and we have to take care not to injure her in doing so. Not long ago Vivian communicated with a thumb up or thumb down, a shake of the head or a displeased grunt. Today she struggles to raise an eyebrow for “yes,” to close her eyes for “no.” This has made communicating with her increasingly difficult and Katie and I often struggle to understand her needs. But we never give up, because she would know and feel the moment we gave up trying. So some questions we ask 10 times in 10 different ways, and we scour her face for a response we can interpret. And in front of her, we remain upbeat, optimistic and patient.
It saddens us to witness the toll this has taken on her spirit. It’s clear that she hates her predicament and she is often frustrated and unhappy with her limitations. But the Vivian we all know is still inside her depleted body. We often see her quick sense of humor, we occasionally catch glimpses of her sharp mind and her incredible memory. Katie and I work hard every day to maintain a closeness to her, to understand her, to make her feel heard and valued and loved. But as it has become more difficult to understand her and confidently communicate with her we lack confidence that we consistently succeed in these areas.
Please pray for Vivian’s comfort, that she would have a deep sense of peace. and security despite her body’s failings, and that Katie and I would be granted wisdom in parenting her and caring for her during these challenging times.
Please join us in sending love and prayers to Vivian, Simon, Katie, and Lucie. If you are able, donate to the Vivian Rose Weaver Defeat DIPG Foundation.