HOUSTON - Twelve-year-old Jashly Avalos is known as a fun, creative girl who loves to cook and snuggle with stuffed animals. Her family was shocked when they found out she has a rare type of brain tumor.
"She has what's called diffuse intrinsic pontine glioma, which we call DIPG. Doctors told her she would have six months to live and that was almost 18 months ago, and she's been surviving. And all through the summer, she was doing well. All of a sudden, just very quickly, she started to deteriorate. That's basically what the main hospitals do is they say that there is no cure," explains family friend, David Grai.
He says doctors offered chemotherapy and radiation to extend her life, but just for a few months. They're hoping for treatment that will allow her to live well into adulthood.
Jashly’s mom speaks Spanish, so her daughter, Jashly’s sister Kimberly, translated for us.
"She means everything to us - that's her little girl, that's her baby, baby of the house," says Kimberly.
She tells us doctors sent them home from the hospital and encouraged them to keep her comfortable with the care of Hospice. They're not ready to let her go, especially after finding a ray of hope.
They learned the Burzynski Clinic in Houston has a history of curing patients with this disease.
Dr. Stanislaw Burzynski administered a special treatment to a girl in a similar situation decades ago. "Her life expectancy was only two to three weeks. She recovered completely! She is now 23 years old, she is a mother of three children and she leads a perfectly normal life. It's possible to cure it, but only for some patients," states Dr. Burzynski.
What makes it impossible for this family is the high cost of the medications. It's such a rare condition, the treatment is outrageously expensive.
"The most expensive part of her treatment is gene-targeted medications, which need to be obtained from a pharmacy. These medications, from the pharmacy, cost about $30,000 a month or even more," exclaims Dr. Burzynski.
David donated $25,000 to pay for Jashly's first month of treatment. Then the Altus Foundation in Houston matched that and picked up the second month of treatment, but now money and time are both running out.
"We found out that it's going to be a long process and now we've gone through the hardest part is getting everything ready right now before it's too late. It's just devastating to see how quickly she's declining," says Thuylan Chang with the foundation.
The family holds on to memories of how Jashly used to be, just a few months ago, when she could still walk, swallow on her own, and hold her own head up. They're relying on their faith to get them through this dark time.
Kimberly says prayer is what’s helping her mother, who is in so much pain over all of this. "Prayers keep her going, keep her stronger, and she feels like Jashly is going to make it. That's the big part that helps her the most. That gives her strength," says Kimberly.
"I want to add to that! My aunt has faith. She has faith that Jashly will get better. She has faith in God and I know she has faith in this clinic and, as David said, most hospitals have given us zero hope, and we have faith that’s going to really help Jashly, so we appreciate the prayers of everybody around us," states Jashly cousin, Angelina.
"Jashly needs all prayers. Pray for Jashly whenever you pray, add Jashly to your prayers. The family will appreciate the prayers," encourages David.
This hurting family hopes and prays that Jashly's life is spared, all while leading the way to help other children.
"If we can cure her, it's just giving hope. Before the new year, we thought there was zero hope, but because of this doctor, there's hope and really we need everyone's support, everyone in the community," states Mohsin Malik with the Altus Foundation.
The Altus Foundation will continue to hold important fundraisers to help this hurting family. To find more information, click here.