Prayers for Amazing Grace

Prayers for Grace!



We have created this page in support of Grace Brinson, age 9, and her family (father Matthew, mother Amanda, and brother Grant, age 11) who welcome your prayers and financial help for Grace who was diagnosed November 2016 with a very rare and very dangerous blood disease called PNH (Paroxysmal Nocturnal Hemoglobinuria https://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria). The only known cure is a bone marrow transplant.


This disease occurs at a rate of approximately 2 people per 3 million worldwide and remains a medical mystery in many aspects. The median age for PNH is usually late 30’s so Grace’s circumstances are especially rare and the aggressive evolution of her illness now includes Aplastic Anemia and Neutropenia. This requires weekly transfusions for platelets, hemoglobin, and a drug called Eculizumab (https://en.wikipedia.org/wiki/Eculizumab).


To help understand something of Grace’s personality and spirit, she is a 4th grader and a go-getter in every way. A teacher at her school said she watched her trying to learn back-flips on the playground this past year and after about 25 full-splats, the only thing that saved her was the school bell! She said that Grace absolutely would not give up, and fortunately the little rascal finally mastered her quest…:) We are all hopeful that this tenacious spirit and determination will help her through the tough fight ahead. Grace’s winning smile and unwavering faith and kindness to others remains an inspiration to all who know her and when she and her brother Grant are not strangling one another, they are both remarkable little angels in our midsts…


Grace begins radiation and chemo treatments in Chapel Hill, NC on February 28, 2017 and hopes to undergo a bone marrow transplant on March 9, 2017. This will be followed by an estimated 100 day isolated recovery before she can return home where she will remain in semi-isolation until sometime in the fall….


Although her family has medical insurance, it cannot cover the myriad of costs that are mounting for the travel, treatments, and procedures required. Because of the illness and distance from home, her parents have been forced to take unpaid time off and her mom will take a 4 month unpaid medical leave to remain with her throughout the process…


We will update this page regularly so please share Grace’s story with family and friends who might add her (and her family) to their prayers or contribute to her fund if they find it in their hearts to help.


With deepest appreciation,

The Family and Friends of Grace Brinson