
04/07/2025
Hey community,
I don’t normally call out for help but I am swallowing all of my pride and doing so.
I’m reaching out with a deeply personal and urgent plea for support.
My precious grandbaby Olivia, one of the brightest of lights, a beautiful soul, and an absolutely gorgeous little angel, has been diagnosed with the second most severe mutation of a rare and terminal condition called Infantile Alexander disease, a devastating illness that has no cure.
There are no words strong enough to describe the heartbreak her parents and our family is feeling. What I can say is that she is surrounded by nothing but love, from her incredible parents, her devoted family, and a village of people holding her in their hearts.
In the midst of grief, we want to do everything we can to support her parents through this horrendousously painful journey. Their love and strength are beyond measure, but they shouldn’t have to carry the weight of this alone.
They are now in contact with a hospital in Philadelphia, USA, about a program/protocol that could potentially help prolong Olivia’s life, but time and resources are both limited.
A fundraiser has been established to help ease the financial pressures they are facing, allowing them to spend precious time together and care for their daughter without added stress, and to support their search for treatment options.
If you are able, please consider helping by sharing, or donating to support them during this most difficult time.
Every dollar, every share, every message of support truly means the world to us.
My son’s words shared on his own page capture the weight of this moment better than I ever could:
“…please consider a share or a donation to help my little angel stay with me before her guardian calls her home.”
Thank you for holding our family in your hearts. 💖
Here is the link to donate or read more:
https://gofund.me/2c75c4a7