The story of Heather
Heather and Jesse McKee’s daughter Ella Rose was 2 years old in 2019 when she was diagnosed with vanishing white matter disease (VWMD) a rare progressive, genetic brain disease that has no cure. This disease affects Ella’s fine and gross motor skills. Ella is now 4 years old and due to weekly physical, occupational, and speech therapies she is making tremendous strides. As expected, the McKee’s and their 11-year old son, Ethan, were devastated to learn that their happy and beautiful girl’s life would ultimately be cut short by this horrible disease. Because of the rarity of this condition, Ella must be seen outside of Charlotte at the Children’s Hospital of Philadelphia. However, in September of 2020, the McKee’s received a glimmer of hope. There is a clinical drug trial in Amsterdam that has the ability to stop the progression of Ella’s disease. The trial will likely take place this spring and there is a strong chance Ella will be selected for it.
Please visit Ella’s Facebook page for updates on her progress and the very first drug trial for this disease. Say a prayer that Ella will be selected.
www.Facebook.com/AMiracleForEllaRose