GaboMilagro - Cure Sanfilippo
Tax deductible
Gabo's Story
Our beloved son Gabo was born on February 14, 2010, the most amazing Valentine's gift ever, and the answer to our prayers to complete our family. His first year's development was normal. However, at 16 months, we noticed he had lost the few words he had acquired up to that point and his overall communication skills had declined. Our search for answers started and the first diagnosis we received was Autism.
While doing some research about potential stem cell treatments for Autism, we visited a Geneticist during the summer of 2013. Additional tests were performed on Gabo, including metabolic testing and genetic sequencing, he received the official diagnosis of "Sanfilippo Syndrome Type A". Sanfilippo Syndrome is one of the Mucopolysaccharidoses (MPS), which are genetic diseases in the group of lysosomal storage diseases (LSD). In other words, a degenerative genetic error of metabolism affects the activity of an enzyme (Heparan N-sulfatase), resulting in storage of sugar molecules that in a normal body are disposed. This leads to the eventual loss of skills including speech and walking, and even the ability to eat. During the terminal stage of the disease, there is a development of recurrent seizures. Life expectancy for Sanfilippo patients is 10-20 years. It is a condition that affects 1 in every 70,000 births. For more information on the disease please refer to the following links:
http://mpssociety.org/mps/mps-iii/
As you can imagine, receiving this diagnosis was probably the worst day of our lives, as the doctor said there is no treatment yet for this disease. There is however, a strong support group amongst the parents of children with Sanfilippo. Within hours of learning of Gabo's condition, we were connected with a wonderful network of parents, all of whom are going through this same situation in countries all over the world.
Hope
While this is a relatively rare disease, we were surprised to hear that there are multiple efforts to find a cure. One of them is Gene Therapy treatment lead by Dr. McCarty at Children's Nationwide Hospital in Ohio. This research is funded by the parents through organizations like Cure Sanfilippo, which to date have helped grant funds for research. In fact, there is a trial planned to start during the end of 2015 or early 2016, but we need your help to get the trial off the ground. Our Gabo Milagro team goal is to raise $50,000 by November 2015. Can you please help us? We believe that through your help we can make a difference and achieve this goal.
When the trial starts there will be a group of children that will be selected. I would like to clarify that reaching our goal does not guarantee that Gabo will be part of the trial. Regardless, if the trial does not happen, the cure will not be developed.
Why Gabo Milagro?
Milagro means miracle in Spanish, and we decided to use this word for two main reasons: One, we need a miracle to heal Gabo and provide him with the opportunity he deserves. Two, we think of Gabo himself as a miracle. Having him in our lives has changed our perspective on life and we make the most out of every minute we spend with him. Every time he laughs, our lives are filled with joy!
Please Help!
Gabo Milagro is funneling funds raised directly to the Cure Sanfilippo foundation, a non-profit 501(Tax ID: 46-4322131). All contributions are tax-deductible in the United States, upon submitting your donation you will receive an email from FirstGiving with information that may be useful when completing your tax return. If you have questions I will be happy to research to determine if the same tax deductions would apply to your country as well.
http://curesff.org/
It is our plea that you help us. Any amount will make a difference toward helping us find the cure for the many kids going through this disease.
May God bless you; we thank you for your support.
Hector & Nancy Garces Avendano
Our beloved son Gabo was born on February 14, 2010, the most amazing Valentine's gift ever, and the answer to our prayers to complete our family. His first year's development was normal. However, at 16 months, we noticed he had lost the few words he had acquired up to that point and his overall communication skills had declined. Our search for answers started and the first diagnosis we received was Autism.
While doing some research about potential stem cell treatments for Autism, we visited a Geneticist during the summer of 2013. Additional tests were performed on Gabo, including metabolic testing and genetic sequencing, he received the official diagnosis of "Sanfilippo Syndrome Type A". Sanfilippo Syndrome is one of the Mucopolysaccharidoses (MPS), which are genetic diseases in the group of lysosomal storage diseases (LSD). In other words, a degenerative genetic error of metabolism affects the activity of an enzyme (Heparan N-sulfatase), resulting in storage of sugar molecules that in a normal body are disposed. This leads to the eventual loss of skills including speech and walking, and even the ability to eat. During the terminal stage of the disease, there is a development of recurrent seizures. Life expectancy for Sanfilippo patients is 10-20 years. It is a condition that affects 1 in every 70,000 births. For more information on the disease please refer to the following links:
http://mpssociety.org/mps/mps-iii/
As you can imagine, receiving this diagnosis was probably the worst day of our lives, as the doctor said there is no treatment yet for this disease. There is however, a strong support group amongst the parents of children with Sanfilippo. Within hours of learning of Gabo's condition, we were connected with a wonderful network of parents, all of whom are going through this same situation in countries all over the world.
Hope
While this is a relatively rare disease, we were surprised to hear that there are multiple efforts to find a cure. One of them is Gene Therapy treatment lead by Dr. McCarty at Children's Nationwide Hospital in Ohio. This research is funded by the parents through organizations like Cure Sanfilippo, which to date have helped grant funds for research. In fact, there is a trial planned to start during the end of 2015 or early 2016, but we need your help to get the trial off the ground. Our Gabo Milagro team goal is to raise $50,000 by November 2015. Can you please help us? We believe that through your help we can make a difference and achieve this goal.
When the trial starts there will be a group of children that will be selected. I would like to clarify that reaching our goal does not guarantee that Gabo will be part of the trial. Regardless, if the trial does not happen, the cure will not be developed.
Why Gabo Milagro?
Milagro means miracle in Spanish, and we decided to use this word for two main reasons: One, we need a miracle to heal Gabo and provide him with the opportunity he deserves. Two, we think of Gabo himself as a miracle. Having him in our lives has changed our perspective on life and we make the most out of every minute we spend with him. Every time he laughs, our lives are filled with joy!
Please Help!
Gabo Milagro is funneling funds raised directly to the Cure Sanfilippo foundation, a non-profit 501(Tax ID: 46-4322131). All contributions are tax-deductible in the United States, upon submitting your donation you will receive an email from FirstGiving with information that may be useful when completing your tax return. If you have questions I will be happy to research to determine if the same tax deductions would apply to your country as well.
http://curesff.org/
It is our plea that you help us. Any amount will make a difference toward helping us find the cure for the many kids going through this disease.
May God bless you; we thank you for your support.
Hector & Nancy Garces Avendano
Organizer
Hector Garces
Organizer
Katy, TX
Cure Sanfilippo Foundation
Beneficiary