A chance to save 9-year-old Alma's life

Hi! My name is Tenley and I'm creating this fundraiser for a family who is very dear to me. Gina Marbis needs help. Her 9-year-old daughter Alma has been diagnosed with an extremely rare neurological disease, caused by a problem with a single gene. There are only 55 cases identified worldwide, and little is understood about the conditions caused by the problem with this gene. In Alma, It's affecting her entire nervous system. Very rapidly her body has deteriorated... She now requires a walker, and needs assistance with eating. Since she was young, she has suffered from epilepsy that has caused severe seizures. Her mother, Gina, has been fighting for her two daughters since they were born — both have suffered from a myriad of health complications. She has been baking and selling desserts to raise money to help Alma, but right now she needs a lot more help than dessert sales can get her. Every dollar counts, and every donation is an immense blessing to this family as they hold on to hope. Right now, Alma's best chance lies in receiving a very costly "gene therapy" to correct the faulty gene.

From Gina Marbis (Alma's mother):

"Alma has experienced debilitating symptoms such as developmental delay, epilepsy, intellectual disability, and movement abnormalities that affect her quality of life and that of us as a family. So far we have exhausted the treatment options available in our locality and are looking for possible solutions abroad.

The only hope for us is in Berlin where scientists led by Dr. Pawel Lisowski, are going to correct the faulty gene with "GENE THERAPY" in collaboration with the following US Institutes: the Nationwide Gene Therapy Center, Columbus; from the Ohio Jacksonville Mayo Clinic and the Salk Institute at the University of California San Diego. This type of investigation and cure are very expensive (about $500,000) of which $200,000 is paid by the family.

I am a single mother and therefore I do not have the necessary sum, so I have entrusted myself to the compassion of those who want to offer us their help. Alma has IRF2BPL and its variation is unique among all cases. We need your support."

THANK YOU for reading and thank you for your help!!!

To learn a bit more about Gina and what her family has been through, you can watch the short documentary, Greater Than Death: