WRIGHTWOOD, Calif. (VVNG.com) Two parents are desperately seeking funds to help keep their two young girls alive and raise awareness after they were diagnosed with a rare and fatal genetic disease a month ago.
Brynne (age 8) and her sister Kendall (age 6) began struggling with memory issues and the ability to retain new information. That’s when Julie Moore- LaFever and her husband Gary Moore began seeking answers from a pediatric neurologist, but then had their worst nightmare become a reality.
“One month ago our world stood still when both of our daughters received the rare, and fatal, diagnosis of the genetic disease Niemann Pick Disease Type C (also referred to it as “Childhood Alzheimer’s”). They are only 8 and 6 years old. When we received this devastating news, our worst fears became our reality,” Julie wrote.
The parents established a Gofundme account to raise money that will allow their two daughters to partake in an experimental treatment that may be life saving for the girls.
The parents say without treatment the two girls are not expected to live past their teenage years, and are pleading for help from the community.
A late stage experimental treatment in a clinical trial is the only hope to save their daughters, since there is no FDA approved treatment or cure at this time.
The clinical trial will require them both to undergo anesthesia every two weeks to receive the treatment.
“It offers so much hope that Brynne and Kendall’s life may be saved for many years, and possibly much longer. Yet, it will be challenging,” stated Julie.
Along with the emotional toll that goes along with the treatments, the financial burden is expected to be immense.
They are hoping with treatment, the symptoms which typically progress until children lose the complete ability to walk, eat, and talk will be will be reduced or stopped.
“We are desperate to get treatments started and know that this will be a considerable medical expense. We are humbly asking for your help and cannot do this alone. We will be persistent to help find a cure and determined to help raise awareness through your help,” the family stated on the fundraiser site.
To learn more about NPC go to http://fightnpc.com/en/
Here is the GOFUNDME.com link to help the family with donations needed for the girls.
A fundraiser event will also be held at the Grizzly Cafe in Wrightwood on 5/22/2017 for those wishing to attend. (Flyer Below)