Donation protected
As many of you know Miss. Emma has been diagnosed with Gluc1 Deficiency (https://ghr.nlm.nih.gov/condition/glut1-deficiency-syndrome) here's a little something her mama wrote when she was diagnosed...
"She has always struggled with developmental delays, low muscle tone, and other movement issues. After years of searching we finally have a diagnosis of Glucose Transporter Type 1 Deficiency Syndrome. This is a rare genetic disorder that impairs brain metabolism. Glucose isn’t transported properly into the brain, leaving it starving for the energy it needs to grow and function."
In the entire USA there are only a handful of specialists ... Our friends Aaron and Erin of course didn't let that stop them from getting Emma an appointment with one ... These specialists our the only ones that can help Emma... I know they are both too proud to ask for help but that's what friends are for... Donate today to make the path to Texas a little easier....
"She has always struggled with developmental delays, low muscle tone, and other movement issues. After years of searching we finally have a diagnosis of Glucose Transporter Type 1 Deficiency Syndrome. This is a rare genetic disorder that impairs brain metabolism. Glucose isn’t transported properly into the brain, leaving it starving for the energy it needs to grow and function."
In the entire USA there are only a handful of specialists ... Our friends Aaron and Erin of course didn't let that stop them from getting Emma an appointment with one ... These specialists our the only ones that can help Emma... I know they are both too proud to ask for help but that's what friends are for... Donate today to make the path to Texas a little easier....
Organizer and beneficiary
Lydia Kugel Frankford
Organizer
Gibsonia, PA
Erin Sapp
Beneficiary