Veronica's Story: Life with a terminal disease.

Support Veronica Blake's Fight Against Leukodystrophy

It's every parent’s nightmare to have their child hospitalized for any reason; the Blake Family has been living this nightmare. Liz and Kevin Blake welcomed their fourth child, Veronica, into their lives in June 2023. Immediately after bringing her home, they noticed that Veronica made a constant noise with every breath.

After being evaluated for a stridor, soon after, she was determined to have visibility and hearing deficits that were diagnosed as deaf blindness. After failing to gain any head/neck control, by month 6, MRIs determined that Veronica was dealing with a neurological issue.

Veronica was officially diagnosed in month 9 with Leukodystrophy, a rare genetic disease that affects the white matter in her brain. Veronica’s brain cannot develop. This affects her sight, hearing, thinking, and control of her body.

Breathing and feeding are not easy for her, and she requires extreme care. Veronica suffers from seizures; she cannot focus her eyes, she cannot hear, she has an unknown amount of visibility, she has poor muscle tone, and she spends her days needing to be fully supported at all times. She is as undeveloped as a newborn, even in her 19th month.

While this has been challenging for the Blakes, who also have three other children (one of which is special needs), things were made much more complicated in the fall of 2024.

In October, Veronica was suddenly hospitalized. Due to her compromised immune system, she required feeding and breathing intervention to survive. Her father has been away from work for three months, living at her bedside, fighting and advocating for her daily. After approximately 15 life-threatening events where Veronica lost oxygen, the Medical team determined that Veronica’s disease had progressed likely to the terminal stage.

In Week 10, after sitting on 24/7 life support for breathing for 3 weeks, Veronica’s parents came to the unimaginable conclusion to remove her support and let her determine her own outcome without intervention. Veronica has defied the odds with the expectation that she would likely pass within hours. She has fought her way past this event, and she is continuing to live her life.

The Blake family will now take time to create a new normal for their life. After Kevin and Liz were separated for 3 months, Liz at home with their 3, 4, and 10-year-old and Kevin in the hospital with Veronica; they are finally preparing to bring Veronica back home, where she will live out her days until her disease progresses again.

In order to bring her home, the Blake family must build a new room in their home for her, work to staff 24/7 in-home nursing for her care, and begin to work on their mental/physical well-being after this life-altering course of events. This draining experience has left them exhausted and overwhelmed.

There are currently 50 different types of Leukodystrophy. Veronica is the third ever diagnosed with her genetic type of Leukodystrophy in the history of the world. This means she is one of the most complex human beings alive, and caring for her requires extreme thought and care.

Thank you for your thoughts and prayers for Veronica’s life. Her condition remains day to day as her life will eventually unpredictably come to an end. Please consider donating to Veronica’s cause to help the Blake Family give her and her siblings the life they deserve. Your contribution will help them provide needed income for their family while Kevin is out of work and assist with Veronica’s other unpredictable expenses. Above all, we hope you will please share this page to maximize reach. Veronica’s story deserves to be told.