WE WON’T EVER GIVE UP......
We need your support, I thank you in advance for taking the time to visit and I sincerely hope that his story will inspire and motivate you to donate.
Our son, Jalin, A TRUE MIRACLE AMONGST US. The love and joy of our lives was diagnosed with a rare, terminal illness at birth in 1995. Currently, no curable treatment exists, and medical management depends on diagnosing and treating each affected organ. Jalin is dependent on lifelong medical care and life sustaining medications as we attempt to prolong his life every day.
One of the major features of this illness and one that cannot be repaired is being born with fewer than the normal amount of bile ducts causing his body to be impaired for life to be able to perform this life sustaining function. Cells within the liver produce liquid called bile. Bile helps to digest fat. It also carries waste products from the liver to the intestines for excretion. Not having the normal amount of bile ducts, causes bile flow from the liver to the gallbladder to become impaired/blocked. As a result, bile builds up in the liver and causes scarring that prevents the liver from working properly to eliminate wastes from the bloodstream.
He has had 2 biliary interventions. A procedure by the name of Cholangiogram, has been performed on Jalin to treat a bile duct blockage, narrowing and/or injury of the bile duct passage. This involves placing a stent within a bile duct to treat and restore the flow of fluids.
Ok, I know it’s a lot, just take a deep breath as you prepare to read on, this is just the beginning, and we are just getting started…..
Impact on us as parents,
as you can imagine it’s devastating at first, but then you commit yourself to doing whatever it takes to give your child the best life possible. As children you spend a large part of your childhood daydreaming of one day getting married and having children. Shocking to find out at the tender age of 23, so full of life and ambitious of what’s ahead, that your baby, isn’t healthy and is in fact on the edge of death.
After so many medical complications and interventions, leading up to the inevitable, that the doctors warned us about, would happen. It finally does happen.. total and complete liver function failure occurred on January 1998.
Impact on Jalin’s life,
on April 13, 1998, I (his mother Angie), had the privilege of giving our son LIFE for a second time, by donating 25% of my own liver for his life saving, living-related liver transplant.
This type of surgery using a live donor is an inspiration for all people who may someday undergo liver transplants. I personally have been a MODEL Liver Donor by bringing attention to the importance of being a Donor and giving the gift of life.
Unfortunately, Jalin’s liver has been under attack for the last 5 years in a vicious cycle of Chronic Liver Rejection, a rare form, which attacks the tissues it does not recognize as part of Jalin’s DNA consistently. The doctors have tried to turn this rejection around but have not been able to get it under control.
In time, the combination of immunosuppressive medications have exhausted his already weakened immune system and caused medication induced sideaffects to emerge, he is diagnosed with:
- Alagille's Syndrome
- Chronic Liver rejection of the transplanted organ
- Subaortic Pulmonic Stenosis - which causes blood flow from the heart to be impaired due to a hole between the two lower chambers of the heart into the lungs
- Butterfly vertebrae - a skeletal defect in which the shape of the bones of the spine, gives the appearance of flying butterflies
- Pruritus - a severe itching of the skin caused by the buildup of bilirubin in the blood
- Medication induced Diabetes - over time the immunosuppressive medications have caused insulin resistance. This is a condition in which muscle, liver, and fat cells do not use insulin well. As a result, your body needs more insulin to help glucose enter cells. At first, the pancreas makes more insulin to keep up with the added demand. Over time, the pancreas can’t make enough insulin, and blood glucose levels rise.
- Medication induced High blood pressure
- Fat-soluble vitamin deficiency, specifically, Magnesium and Vitamin K
and most recently,
- Kidney problems, when the accumulation of protein was discovered being present in one of his kidneys.
Prognosis: predicting prognosis is difficult and it is dependent on the severity of liver damage and cardiac complications which are monitored closely.
At this pace, the doctors approximate 1 to 1 ½ more years with his current liver, taking such a beating, that a second transplant will have to be performed to replace his liver. In addition, 1 of his Kidneys, will have to replaced as well.
After doing the research for this complicated transplant situation, the costs are estimated to be in the range from $400,000.00 to $600,000.00. A percentage of which will be covered by insurance, the rest must be covered by the family. This fund raising effort is to help offset the medical bills, and aftercare he will need.
We are so thankful for everyone who will click, visit and donate on this page. As we prepare for the tough days ahead, hoping for the best but preparing for the worst, your donation, which is completely at your discretion, will help us on this journey. I sincerely hope that his story will inspire and motivate you.
Jalin loved by all that he has come in contact with, with his vibrant, active, and brilliant mind. He leaves us all in awe of his great spirit, never complaining, and even on his sickest days, always having something motivational to say. He surprises us all with his unselfishness and willingness to give the shirt off of his back for anyone PERIOD. His illness often interferes with routines and activities, but he manages to see the positive side of things. Together we keep him grounded and keep his eyes focused on the potential of a positive outcome. We are just so proud of him.
If you are able please leave a kind message, whether it is a prayer or something motivational to entertain our Superman, we would be so ever grateful.
Thank you
We need your support, I thank you in advance for taking the time to visit and I sincerely hope that his story will inspire and motivate you to donate.
Our son, Jalin, A TRUE MIRACLE AMONGST US. The love and joy of our lives was diagnosed with a rare, terminal illness at birth in 1995. Currently, no curable treatment exists, and medical management depends on diagnosing and treating each affected organ. Jalin is dependent on lifelong medical care and life sustaining medications as we attempt to prolong his life every day.
One of the major features of this illness and one that cannot be repaired is being born with fewer than the normal amount of bile ducts causing his body to be impaired for life to be able to perform this life sustaining function. Cells within the liver produce liquid called bile. Bile helps to digest fat. It also carries waste products from the liver to the intestines for excretion. Not having the normal amount of bile ducts, causes bile flow from the liver to the gallbladder to become impaired/blocked. As a result, bile builds up in the liver and causes scarring that prevents the liver from working properly to eliminate wastes from the bloodstream.
He has had 2 biliary interventions. A procedure by the name of Cholangiogram, has been performed on Jalin to treat a bile duct blockage, narrowing and/or injury of the bile duct passage. This involves placing a stent within a bile duct to treat and restore the flow of fluids.
Ok, I know it’s a lot, just take a deep breath as you prepare to read on, this is just the beginning, and we are just getting started…..
Impact on us as parents,
as you can imagine it’s devastating at first, but then you commit yourself to doing whatever it takes to give your child the best life possible. As children you spend a large part of your childhood daydreaming of one day getting married and having children. Shocking to find out at the tender age of 23, so full of life and ambitious of what’s ahead, that your baby, isn’t healthy and is in fact on the edge of death.
After so many medical complications and interventions, leading up to the inevitable, that the doctors warned us about, would happen. It finally does happen.. total and complete liver function failure occurred on January 1998.
Impact on Jalin’s life,
on April 13, 1998, I (his mother Angie), had the privilege of giving our son LIFE for a second time, by donating 25% of my own liver for his life saving, living-related liver transplant.
This type of surgery using a live donor is an inspiration for all people who may someday undergo liver transplants. I personally have been a MODEL Liver Donor by bringing attention to the importance of being a Donor and giving the gift of life.
Unfortunately, Jalin’s liver has been under attack for the last 5 years in a vicious cycle of Chronic Liver Rejection, a rare form, which attacks the tissues it does not recognize as part of Jalin’s DNA consistently. The doctors have tried to turn this rejection around but have not been able to get it under control.
In time, the combination of immunosuppressive medications have exhausted his already weakened immune system and caused medication induced sideaffects to emerge, he is diagnosed with:
- Alagille's Syndrome
- Chronic Liver rejection of the transplanted organ
- Subaortic Pulmonic Stenosis - which causes blood flow from the heart to be impaired due to a hole between the two lower chambers of the heart into the lungs
- Butterfly vertebrae - a skeletal defect in which the shape of the bones of the spine, gives the appearance of flying butterflies
- Pruritus - a severe itching of the skin caused by the buildup of bilirubin in the blood
- Medication induced Diabetes - over time the immunosuppressive medications have caused insulin resistance. This is a condition in which muscle, liver, and fat cells do not use insulin well. As a result, your body needs more insulin to help glucose enter cells. At first, the pancreas makes more insulin to keep up with the added demand. Over time, the pancreas can’t make enough insulin, and blood glucose levels rise.
- Medication induced High blood pressure
- Fat-soluble vitamin deficiency, specifically, Magnesium and Vitamin K
and most recently,
- Kidney problems, when the accumulation of protein was discovered being present in one of his kidneys.
Prognosis: predicting prognosis is difficult and it is dependent on the severity of liver damage and cardiac complications which are monitored closely.
At this pace, the doctors approximate 1 to 1 ½ more years with his current liver, taking such a beating, that a second transplant will have to be performed to replace his liver. In addition, 1 of his Kidneys, will have to replaced as well.
After doing the research for this complicated transplant situation, the costs are estimated to be in the range from $400,000.00 to $600,000.00. A percentage of which will be covered by insurance, the rest must be covered by the family. This fund raising effort is to help offset the medical bills, and aftercare he will need.
We are so thankful for everyone who will click, visit and donate on this page. As we prepare for the tough days ahead, hoping for the best but preparing for the worst, your donation, which is completely at your discretion, will help us on this journey. I sincerely hope that his story will inspire and motivate you.
Jalin loved by all that he has come in contact with, with his vibrant, active, and brilliant mind. He leaves us all in awe of his great spirit, never complaining, and even on his sickest days, always having something motivational to say. He surprises us all with his unselfishness and willingness to give the shirt off of his back for anyone PERIOD. His illness often interferes with routines and activities, but he manages to see the positive side of things. Together we keep him grounded and keep his eyes focused on the potential of a positive outcome. We are just so proud of him.
If you are able please leave a kind message, whether it is a prayer or something motivational to entertain our Superman, we would be so ever grateful.
Thank you