Jaymee Emma Hernandez
Donation protected
Jaymee Emma Hernandez
5/7/11-10/13/15
Jaymee Emma Hernandez, was born on May 5, 2011 with an enlarge spleen and liver. She weighed only 4lbs, 8oz and spent her first month as a new born in the hospital. With doctors trying to figure out what was wrong with her, she was in and out of the hospital numerous times before we finally got an answer. It was never what expected.
On November 2013, at 2yrs old Jaymee was diagnosed with Niemann-Pick Disease Type C (NPC1) at the UCLA Medical Center. NPC1 is a rare genetic disorder, where my sister and her husband are both carriers. The cells of NPC Patient are not able to metabolized cholesterol and other lipids properly, which leads to an excessive accumulation in the liver, spleen and brain. Type C Niemann-Pick Disease has an estimated 500 cases diagnosed worldwide and has been initially diagnosed worldwide and has been initially diagnosed as a learning disability, mild intellectual disability, “clumsiness”, and delayed development of fine motor skills. NPC is always Fatal.
The National Institute of Health (NIH) is currently working on a clinical trial with the drug “Cyclodextrin.” However, not everyone is approved to participate in the trial and the drug has not been proven to cure but rather slow down the process on NPC.
Throughout the years Jaymee endured many surgeries and plenty of hospital stays due to her disease. Our family made sure she felt all the love and support we had for her. Her parents did an amazing job to make sure she was always happy and comfortable. Although Jaymee was able to talk, walk, sing, and go to school she slowly kept declining; within her last year of life Jaymee lost her mobility and her speech.
With a heavy and broken heart, Jaymee Emma Hernandez gained her angel wings at 7:37am on 10.13.15; she was only 4yrs old. This disease took everything from her. Jaymee is a warrior princess; she fought till the very end. We are so proud of her parents Jessica and Pedro Hernandez for her strength and courage; they truly made the best of Jaymee’s life!
Money will be used to cover for funeral expenses.
We thank all of you for your support to our family.
5/7/11-10/13/15
Jaymee Emma Hernandez, was born on May 5, 2011 with an enlarge spleen and liver. She weighed only 4lbs, 8oz and spent her first month as a new born in the hospital. With doctors trying to figure out what was wrong with her, she was in and out of the hospital numerous times before we finally got an answer. It was never what expected.
On November 2013, at 2yrs old Jaymee was diagnosed with Niemann-Pick Disease Type C (NPC1) at the UCLA Medical Center. NPC1 is a rare genetic disorder, where my sister and her husband are both carriers. The cells of NPC Patient are not able to metabolized cholesterol and other lipids properly, which leads to an excessive accumulation in the liver, spleen and brain. Type C Niemann-Pick Disease has an estimated 500 cases diagnosed worldwide and has been initially diagnosed worldwide and has been initially diagnosed as a learning disability, mild intellectual disability, “clumsiness”, and delayed development of fine motor skills. NPC is always Fatal.
The National Institute of Health (NIH) is currently working on a clinical trial with the drug “Cyclodextrin.” However, not everyone is approved to participate in the trial and the drug has not been proven to cure but rather slow down the process on NPC.
Throughout the years Jaymee endured many surgeries and plenty of hospital stays due to her disease. Our family made sure she felt all the love and support we had for her. Her parents did an amazing job to make sure she was always happy and comfortable. Although Jaymee was able to talk, walk, sing, and go to school she slowly kept declining; within her last year of life Jaymee lost her mobility and her speech.
With a heavy and broken heart, Jaymee Emma Hernandez gained her angel wings at 7:37am on 10.13.15; she was only 4yrs old. This disease took everything from her. Jaymee is a warrior princess; she fought till the very end. We are so proud of her parents Jessica and Pedro Hernandez for her strength and courage; they truly made the best of Jaymee’s life!
Money will be used to cover for funeral expenses.
We thank all of you for your support to our family.
Organizer and beneficiary
Margarita Gonzalez
Organizer
Santa Ana, CA
Eskayla Mendoza
Beneficiary