In Memory of Embree AlexanderSydnie Dimond2023-09-15T20:15:45+00:00
In Memory of Embree Alexander
Funds research, education, prevention, and family services.
Embree Ray Alexander June 11, 2017 – September 17, 2018
Even though Embree’s life on this earth was far too short, she continues to leave a lasting impression on the hearts of many. A beautiful little girl that brought so much joy and light to our lives, she lived a sinless life and knew nothing but pure love. Some of her favorite things included being sung to while cuddled up with her parents and of course, getting playful doggy-kisses from her pet lab, Kinzie. We have fond memories of her sweet smile and how she would often get the cutest little hiccups when something made her giggle too hard.
At 11 months old, Embree was diagnosed with infantile Sandhoff disease. She was only able to sit up with support for about a month before this terrible disease began to run its course. Because of progressive muscle weakness and atrophyWasting away or diminution. Muscle atrophy is wasting of muscle, decrease in muscle mass. A nerve can also show atrophy. For example, atrophy of the optic nerve diminishes vision. Definition from: http://www.medicinenet.com/script/main/hp.asp by MedicineNet Inc. More, she lost all trunk support. As the disease progressed, Embree also lost her vision, her ability to swallow, and began having seizuresA seizure is a sudden change in behavior due to an excessive electrical activity in the brain. There are a wide variety of possible symptoms of seizures, depending on what parts of the brain are affected. Many types of seizures cause loss of consciousness with twitching or shaking of the body. However, some seizures consist of staring spells that can easily go unnoticed. Occasionally, seizures can cause temporary abnormal sensations or visual disturbances. More.
Embree gained her angel wings on September 17, 2018. She was only 15 months old. We want everyone to know our daughter’s story and how she continues to influence our lives for the better. NTSAD (National Tay-Sachs and Allied Diseases) has been a wonderful support system for our family since our daughter’s diagnosis. Clinical trials for these diseases are underway and we want to see a cure! We want Embree’s legacy to live on.
Help us honor her memory by learning about Sandhoff and the other allied diseases. Helping spread awareness is so crucial to hopefully bringing an end to such heartbreaking losses. Doctors and scientists are on their way to some amazing breakthroughs, but not without our help. Please consider making a donation to NTSAD, a non-profit organization, in memory of our sweet girl.
National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
The content of this website is intended for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis, or treatment.
The National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
Get the latest news from NTSAD about our Community, the research that provides hope, and what is happening in the world of rare disease.
2001 Beacon Street, Suite 204
Boston, MA 02135
(617) 277-4463 firstname.lastname@example.org
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street, Suite 204, Boston, MA 02135
(617) 277-4463 | email@example.com