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Hello everyone,
My name is Christina and I am the aunt of Jacob. I would like to share Jacob's story to explain why this is being created.
Eric Jacob Arriaga came into the world on September 1, 2000. His birth was just like any other with one exception: only half of Jacob's heart had formed and he would be taken from his parents, Shannon and Eric, just seconds after birth and rushed to the Neonatal Intensive Care Unit. Jacob was born with Hypoplastic Right Heart Syndrome. At just 6 days old Jacob would have his first open heart surgery in a series of surgeries intended to keep him alive. Jacob was again in the hospital at 6 months old for another open heart surgery and then again at 2 years old. This surgery was to install a pacemaker and to perform the Fontan Procedure to stop his blue blood and red blood from mixing together. Not long after his voice became raspy so his parents took him for a check up. The doctor immediately called for an ambulance and Jacob was rushed to the hospital. He had so much fluid in his chest that his lungs were about to collapse. His doctors discovered he had Protein-Losing Enteropathy, an uncommon complication of the Fontan Procedure.
Protein-Losing Enteropathy causes a person to lose massive amounts of protein through the bowels. Jacob spent Easter in the hospital that year. He fought and fought the PLE, going in and out of the hospital and we almost lost him 3 different times. When he was 5 he was given a huge dose of immunoglobulin over a 12 hour period. At this time heart transplantation was not an option for him, but the IVIG seemed to do it's job and the PLE seemed to go away. In reality the PLE had not gone away; it was in fact laying dormant in his body and waiting to kill him. With the IVIG treatment Jacob had a few relaxed years but he never really had energy. He always tired quickly and his parents were always very cautious and protective of him.
At age 11 Jacob's pacemaker needed to be replaced. Soon after this procedure his mother started noticing signs of the PLE returning. One night Jacob developed a headache and asked to take a warm bath to try to relax it away. While in the bath he began vomiting and he collapsed, turning blue. He stopped breathing and was rushed to the hospital where he was listed in critical condition. Doctors asked his parents to call all the family to come say goodbye to him because they did not feel he would pull through. We were told that the PLE had been silently attacking him for a long time and his entire body was unable to hold any nutrients. Miraculously he pulled through, but over the next 2 years he had severe vomiting, diarrhea , and headaches every day. He developed Hospital Anxiety from the frequent stays and was on 18 different medications per day, but his condition continued to deteriorate. By the time he was 14 Jacob became so sick that his mother went through special training to administer IVIG treatments again, but this time once a week through four places in his belly. His mother found a few other families on Facebook who were dealing with the same illness and discovered that many of the kids were passing away from one day to the next. Through her research, she discovered that PLE is often only resolved through heart transplantation, and that the mortality rate for cardiac kids with PLE is just 50%. Since then she has been fighting like hell to get Jacob evaluated for a heart transplant. Here in Texas, Houston is known as the medical capital, so Jacob was sent to Texas Children's Hospital in Houston. By this time Mom and Dad live seperately and big sister Daijha is working towards graduation, so Dad and sister had to stay living in Austin.
He was finally evaluated in the beginning of September of this year and from then on everything has been happening so fast. On Spetember 18, 2015 Jacob got the call that he qualified for a heart transplant. His doctors discovered he would not make it much longer without one. On September 25 he was officially placed on the list and he and his mother had to leave their home of Austin, Texas to relocate to Sugar Land, Texas to wait for a new heart. On Monday, November 14 at 5a.m. we got the call that a heart had been found for Jacob and at exactly 6:13 p.m. that same day Jacob's new heart beat for the first time inside his chest.
Through all of this Jacob has never once complained about any of it. Even though he misses his Dad and sister terribly his spirit is always incredibly high and he shocks us on a daily basis with how positive his attitude is. His doctors describe him as the happiest, most upbeat heart patient they've ever had. Jacob spends his time comforting other patients and making as many people laugh and smile as he can. He has dreams of doing things he's never been able to do, things he never thought he'd live long enough to do, like travel or go on a rollercoaster ride. Even though he's gotten bad news many times his positive outlook has not changed and he is more determined than ever to live a wonderful life for as long as he's blessed to.
As of now Jacob remains in the hospital and he will remain there until it is determined that his body is not rejecting the new heart and he is stable enough to go home. We are all so unbelievably grateful for the support, prayers , and kind words we have received so far. It is an overwhelming feeling and words cannot begin to convey how much it means to the family.
This GoFundMe page aims to shine a light on PLE and to encourage people to register to become organ donors. The list of patients in need of a transplant is vast in comparison to the amount of organs available and many will die before their time comes. Jacob's new heart comes from a 16 year old girl. We may never get the chance to know who she was or to thank her family for their incredible Life Gift, but they saved Jacob's life. By becoming an organ donor you have the opportunity to help up to 80 people at one time.
Jacob's mother Shannon is his only caretaker. While her employer has been gracious, she will not be able to go back to work for at least a year. Even with a new heart Jacob has a long road of recovery ahead. PLE has left his body ravaged and at 15 he weighs just 58 pounds. Jacob needs his mother now more than ever. Your donation will help keep this little family afloat and without the extra burden of financial worries so that his mother can focus on caring for him. It will help to provide them with basic needs including a roof over their heads and help with some of the medical expenses. Although each donation means so much to us, the support means even more. Every thought, message, and positive prayer are helping Jacob get one step closer to his new chance at life. Every little bit counts. Most importantly, they keep Jacob in high spirits.
We would like to thank everyone in advance for all you have done.
With so much love,
Jacob and Family
My name is Christina and I am the aunt of Jacob. I would like to share Jacob's story to explain why this is being created.
Eric Jacob Arriaga came into the world on September 1, 2000. His birth was just like any other with one exception: only half of Jacob's heart had formed and he would be taken from his parents, Shannon and Eric, just seconds after birth and rushed to the Neonatal Intensive Care Unit. Jacob was born with Hypoplastic Right Heart Syndrome. At just 6 days old Jacob would have his first open heart surgery in a series of surgeries intended to keep him alive. Jacob was again in the hospital at 6 months old for another open heart surgery and then again at 2 years old. This surgery was to install a pacemaker and to perform the Fontan Procedure to stop his blue blood and red blood from mixing together. Not long after his voice became raspy so his parents took him for a check up. The doctor immediately called for an ambulance and Jacob was rushed to the hospital. He had so much fluid in his chest that his lungs were about to collapse. His doctors discovered he had Protein-Losing Enteropathy, an uncommon complication of the Fontan Procedure.
Protein-Losing Enteropathy causes a person to lose massive amounts of protein through the bowels. Jacob spent Easter in the hospital that year. He fought and fought the PLE, going in and out of the hospital and we almost lost him 3 different times. When he was 5 he was given a huge dose of immunoglobulin over a 12 hour period. At this time heart transplantation was not an option for him, but the IVIG seemed to do it's job and the PLE seemed to go away. In reality the PLE had not gone away; it was in fact laying dormant in his body and waiting to kill him. With the IVIG treatment Jacob had a few relaxed years but he never really had energy. He always tired quickly and his parents were always very cautious and protective of him.
At age 11 Jacob's pacemaker needed to be replaced. Soon after this procedure his mother started noticing signs of the PLE returning. One night Jacob developed a headache and asked to take a warm bath to try to relax it away. While in the bath he began vomiting and he collapsed, turning blue. He stopped breathing and was rushed to the hospital where he was listed in critical condition. Doctors asked his parents to call all the family to come say goodbye to him because they did not feel he would pull through. We were told that the PLE had been silently attacking him for a long time and his entire body was unable to hold any nutrients. Miraculously he pulled through, but over the next 2 years he had severe vomiting, diarrhea , and headaches every day. He developed Hospital Anxiety from the frequent stays and was on 18 different medications per day, but his condition continued to deteriorate. By the time he was 14 Jacob became so sick that his mother went through special training to administer IVIG treatments again, but this time once a week through four places in his belly. His mother found a few other families on Facebook who were dealing with the same illness and discovered that many of the kids were passing away from one day to the next. Through her research, she discovered that PLE is often only resolved through heart transplantation, and that the mortality rate for cardiac kids with PLE is just 50%. Since then she has been fighting like hell to get Jacob evaluated for a heart transplant. Here in Texas, Houston is known as the medical capital, so Jacob was sent to Texas Children's Hospital in Houston. By this time Mom and Dad live seperately and big sister Daijha is working towards graduation, so Dad and sister had to stay living in Austin.
He was finally evaluated in the beginning of September of this year and from then on everything has been happening so fast. On Spetember 18, 2015 Jacob got the call that he qualified for a heart transplant. His doctors discovered he would not make it much longer without one. On September 25 he was officially placed on the list and he and his mother had to leave their home of Austin, Texas to relocate to Sugar Land, Texas to wait for a new heart. On Monday, November 14 at 5a.m. we got the call that a heart had been found for Jacob and at exactly 6:13 p.m. that same day Jacob's new heart beat for the first time inside his chest.
Through all of this Jacob has never once complained about any of it. Even though he misses his Dad and sister terribly his spirit is always incredibly high and he shocks us on a daily basis with how positive his attitude is. His doctors describe him as the happiest, most upbeat heart patient they've ever had. Jacob spends his time comforting other patients and making as many people laugh and smile as he can. He has dreams of doing things he's never been able to do, things he never thought he'd live long enough to do, like travel or go on a rollercoaster ride. Even though he's gotten bad news many times his positive outlook has not changed and he is more determined than ever to live a wonderful life for as long as he's blessed to.
As of now Jacob remains in the hospital and he will remain there until it is determined that his body is not rejecting the new heart and he is stable enough to go home. We are all so unbelievably grateful for the support, prayers , and kind words we have received so far. It is an overwhelming feeling and words cannot begin to convey how much it means to the family.
This GoFundMe page aims to shine a light on PLE and to encourage people to register to become organ donors. The list of patients in need of a transplant is vast in comparison to the amount of organs available and many will die before their time comes. Jacob's new heart comes from a 16 year old girl. We may never get the chance to know who she was or to thank her family for their incredible Life Gift, but they saved Jacob's life. By becoming an organ donor you have the opportunity to help up to 80 people at one time.
Jacob's mother Shannon is his only caretaker. While her employer has been gracious, she will not be able to go back to work for at least a year. Even with a new heart Jacob has a long road of recovery ahead. PLE has left his body ravaged and at 15 he weighs just 58 pounds. Jacob needs his mother now more than ever. Your donation will help keep this little family afloat and without the extra burden of financial worries so that his mother can focus on caring for him. It will help to provide them with basic needs including a roof over their heads and help with some of the medical expenses. Although each donation means so much to us, the support means even more. Every thought, message, and positive prayer are helping Jacob get one step closer to his new chance at life. Every little bit counts. Most importantly, they keep Jacob in high spirits.
We would like to thank everyone in advance for all you have done.
With so much love,
Jacob and Family
Organizer and beneficiary
Shannon Arriaga
Beneficiary