Baby Nathan's Continued Care
Donation protected
WHY DONATIONS?
My name is Pamela Aguirre, were from Bakersfield, California, Our family's social media name goes by @HelpBabyNathan. Any funds raised are going to be used to pay for all of our living expenses in order for us to continue to care our child, not only our living expenses but also our gas for hospital visits, medical expenses not covered by insurance and medications etc, GoFundMe takes 2.9% of money raised the rest of the funds will go directly to our family. Its been a very difficult time for us, We left our careers in order to care for Nathan, a year later and he still needed 24/7 care due to his severe reflux, vomiting and seizures, COVID makes things even harder. We have an 11 year old who is autistic, attending online classes. so the financial instability is becoming extremely heavy. A YouTube family called The Labrant family, are helping us raise funds, anything helps so we are extremely grateful. If you're unable to donate, A prayer is more than enough but if you still want to help, please join us in our mission to raise awareness by sharing Nathan's story. Thank you.
Below are all of Nathan's diagnosis and symptoms:
DIAGNOSIS: Cutis Laxa Type 3
MUTATION: ALDH18A1
SYMPTOMS: He has growth deficiencies, Intellectual disability, loose joints & skin, cataracts, corneal abnormalities, Mal Rotation, seizures, involuntary muscle contractions, Trouble eating, cyclic vomiting and severe acid reflux.
OUR STORY FROM THE BEGINNING:
Baby Nathan was born full term October 2018, weighing just two pounds, but before he was born, doctors had already began to notice he was small. They had my wife Pamela visit a specialist during the end of her second trimester. That’s when it was confirmed, Nathan was not growing normally. “I prepared myself for him being small, I prepared myself for the dwarfism, for whatever came my way,” said Pamela.
He wasn’t premature, so Nathan’s size confused physicians. He was in the NICU for observation for 2 months, during this time genetic testing and every test failed to offer answers. Nathan needed to gain weight in order to be discharged. In the following weeks he gained three pounds, then topping five pounds, Nathan was finally ready to be discharged, until the seizures started.
Nathan had to be rushed to Valley children’s Hospital In Madera, all test failed there as well. At this time my wife and I were really starting to lose hope, we weren’t getting any answers as to what was going on with our baby. All we saw were tubes, PICC lines and NG tubes. The best word to describe of all of this was a nightmare. As parents we began to question ourselves, we gave into fear and anxiety, did we do something wrong? Was this all our fault? Will our baby survive? So many questions..
The chief geneticist came to us with sad news, In her long time in genetics this was the first time she had seen something like this, so she told us about a state funded program called Project Baby Bear, they conducted a new form of testing called Whole Genome Sequencing. Thanks to that test we received a diagnosis called Cutis Laxa Type 3 from a denovo mutation called ALDH18A1, Non inherited. The symptoms are growth deficiencies, moderate to severe intellectual disability, loose joints and skin, cataracts, corneal abnormalities, mal rotation, seizures, involuntary muscle contractions that force the body in abnormal, sometimes painful movements and positions, trouble eating, hernias, cyclic vomiting and severe acid reflux.
We are extremely grateful to have a diagnosis but we are now facing a disease that has no cure, or treatments. We were discharged from the hospital March 2019. Since then we have focused on raising awareness, reaching out to as many people as we can, not only raise awareness but to find other people with this disease. So far there are only 3 other people in the world with this diagnosis.
We have learned so much about acceptance and perseverance, Regardless of this situation, we remain positive. We believe that everything happens for a reason. Nathan has inspired thousands of people so far, although it might be a difficult situation we have to follow baby Nathan’s example of never giving up, He’s a warrior, destined for greatness. How you define greatness is completely up to you. There’s a word in our family that we always use called Auspicious, it means conducive to success, favorable. We like to remind everyone that we are all auspicious. We like to focus on the journey not the destination, worrying about the future only bring anxiety so we will continue this path together, as long as Nathan doesn’t give up, neither will we. Stray strong, we hope that our story can inspire you, you’re not alone. We’re in this together, remember you ARE Auspicious!!
THANK YOU TO THE LABRANT FAMILY FOR ALL OF THEIR LOVE.
YOUTUBE: https://www.youtube.com/watch?v=pC8gYfDyYTI&feature=youtu.be
INSTAGRAM:
https://www.instagram.com/auspiciousmando/
My name is Pamela Aguirre, were from Bakersfield, California, Our family's social media name goes by @HelpBabyNathan. Any funds raised are going to be used to pay for all of our living expenses in order for us to continue to care our child, not only our living expenses but also our gas for hospital visits, medical expenses not covered by insurance and medications etc, GoFundMe takes 2.9% of money raised the rest of the funds will go directly to our family. Its been a very difficult time for us, We left our careers in order to care for Nathan, a year later and he still needed 24/7 care due to his severe reflux, vomiting and seizures, COVID makes things even harder. We have an 11 year old who is autistic, attending online classes. so the financial instability is becoming extremely heavy. A YouTube family called The Labrant family, are helping us raise funds, anything helps so we are extremely grateful. If you're unable to donate, A prayer is more than enough but if you still want to help, please join us in our mission to raise awareness by sharing Nathan's story. Thank you.
Below are all of Nathan's diagnosis and symptoms:
DIAGNOSIS: Cutis Laxa Type 3
MUTATION: ALDH18A1
SYMPTOMS: He has growth deficiencies, Intellectual disability, loose joints & skin, cataracts, corneal abnormalities, Mal Rotation, seizures, involuntary muscle contractions, Trouble eating, cyclic vomiting and severe acid reflux.
OUR STORY FROM THE BEGINNING:
Baby Nathan was born full term October 2018, weighing just two pounds, but before he was born, doctors had already began to notice he was small. They had my wife Pamela visit a specialist during the end of her second trimester. That’s when it was confirmed, Nathan was not growing normally. “I prepared myself for him being small, I prepared myself for the dwarfism, for whatever came my way,” said Pamela.
He wasn’t premature, so Nathan’s size confused physicians. He was in the NICU for observation for 2 months, during this time genetic testing and every test failed to offer answers. Nathan needed to gain weight in order to be discharged. In the following weeks he gained three pounds, then topping five pounds, Nathan was finally ready to be discharged, until the seizures started.
Nathan had to be rushed to Valley children’s Hospital In Madera, all test failed there as well. At this time my wife and I were really starting to lose hope, we weren’t getting any answers as to what was going on with our baby. All we saw were tubes, PICC lines and NG tubes. The best word to describe of all of this was a nightmare. As parents we began to question ourselves, we gave into fear and anxiety, did we do something wrong? Was this all our fault? Will our baby survive? So many questions..
The chief geneticist came to us with sad news, In her long time in genetics this was the first time she had seen something like this, so she told us about a state funded program called Project Baby Bear, they conducted a new form of testing called Whole Genome Sequencing. Thanks to that test we received a diagnosis called Cutis Laxa Type 3 from a denovo mutation called ALDH18A1, Non inherited. The symptoms are growth deficiencies, moderate to severe intellectual disability, loose joints and skin, cataracts, corneal abnormalities, mal rotation, seizures, involuntary muscle contractions that force the body in abnormal, sometimes painful movements and positions, trouble eating, hernias, cyclic vomiting and severe acid reflux.
We are extremely grateful to have a diagnosis but we are now facing a disease that has no cure, or treatments. We were discharged from the hospital March 2019. Since then we have focused on raising awareness, reaching out to as many people as we can, not only raise awareness but to find other people with this disease. So far there are only 3 other people in the world with this diagnosis.
We have learned so much about acceptance and perseverance, Regardless of this situation, we remain positive. We believe that everything happens for a reason. Nathan has inspired thousands of people so far, although it might be a difficult situation we have to follow baby Nathan’s example of never giving up, He’s a warrior, destined for greatness. How you define greatness is completely up to you. There’s a word in our family that we always use called Auspicious, it means conducive to success, favorable. We like to remind everyone that we are all auspicious. We like to focus on the journey not the destination, worrying about the future only bring anxiety so we will continue this path together, as long as Nathan doesn’t give up, neither will we. Stray strong, we hope that our story can inspire you, you’re not alone. We’re in this together, remember you ARE Auspicious!!
THANK YOU TO THE LABRANT FAMILY FOR ALL OF THEIR LOVE.
YOUTUBE: https://www.youtube.com/watch?v=pC8gYfDyYTI&feature=youtu.be
INSTAGRAM:
https://www.instagram.com/auspiciousmando/
Organizer
Auspicious Mando
Organizer
Bakersfield, CA
