Olliestrong - Save Our Son's Life
Donation protected
My 5 year old son, Oliver, is my best friend. We have gone everywhere together and hung out all the time. We go to car races at Mosport, we go to car shows and cruises, we play at playgrounds and walk down by the lake, enjoying the summer weather. We go to the Ex every year, Canada's Wonderland, Niagara Falls, you get the picture. But October 2014, my sweet 5 year old boy, Oliver woke up yellow one day. After some initial blood tests and an ultrasound, we discovered he had 3 kidney stones and his liver enzymes were almost 2000. Normal is max. 40. We spent the next 3 weeks at Sick Kids Hospital for an acute onset of autoimmune hepatitis, during which time, his enzymes climbed to over 5000! Oliver had a liver biopsy which really only told us that the Dr.'s had no idea what was causing the hepatitis. He was given a high dose of prednisone which promptly gave him every side effect one could get. Ollie endured and battled the drug for 5 months. While medicated with one of the most horrible drugs on the planet, Oliver gained 18 pounds, had constant joint and stomach pain, debilitating back pain and unimaginable migraines. Then in January, we discovered through his weekly blood tests, Oliver had low immunoglobulin G (an important bullet in the immune system's gun), and we were sent to the Immunology dept. at Sick Kids. When their bloodwork revealed a severe decrease in blood platelet and white blood cell production, we were passed on to Hematology. After 7 long months of enduring tests and being bounced around from Liver, Nephrology (kidneys), Immunology and now Hematology, we were finally getting a sense of what we were up against. On April 13, my Little Man was put through a bone marrow biopsy. Then the devastation came, on April 23, 2015, we received a diagnosis. Oliver has Very Severe Aplastic Anemia. A VERY rare blood disease that affects 2 people in a million every year. His bone marrow is producing cells at 10% capacity. Melitta (my wife), Scarlett (my 2 year old daughter) and I have been typed to see if we are a bone marrow match. The treatment for Oliver's Aplastic Anemia is a bone marrow transplant.
On May 7, 2015, things became more complicated and more dire. A condition was discovered in Oliver's DNA, called Dyskerotosis Congenita (DC). This is one of the most complex and serious diseases in the world, with only about 1000 people diagnosed worldwide. The basics are this: We have caps on our chromosomes called Telomeres. These telomeres protect our genes from being mutated, encourage cell division and hold all our secrets to how and why we age. With DC, telomere length is short, essentially prematurely aging the person affected. The person is vulnerable to all kinds of malignancies, pulmonary issues and Aplastic Anemia (Bone Marrow Failure).
Never in my worst nightmares, over the last 6 years since he's been my best friend, could I have imagined this. Everybody says Stay Strong, blah blah blah, but until your child has a disease that is fatal, if not treated properly, you have no idea what staying strong really means until you are faced with it. We have been destroyed financially and we are barely keeping it together. I find myself crying when I look at him having fun because I know how little fun he actually gets. We have dedicated every waking second trying to learn about this disease and trying to determine what else we can do. We will continue to go to the ends of the world for this little man and although it is emotionally and financially straining, we will do whatever it takes, one day at a time. This is the most helpless feeling IN EXISTENCE! I don't even know why I write the private posts on Facebook that I do, I guess because we see so little of anyone outside us 4 now that it's the only way to vent. Please send your thoughts and prayers to my Little Man Oliver, and PLEASE strongly consider donating Bone Marrow.
It is a 1% chance a parent is a marrow match, and Scarlett is the best shot at 25%. And unfortunately, there is no way to only donate to Oliver, if someone is a match. However, if any of you are serious about it (it's a bit of a process), please go to www.Onematch.com in Canada and www.Bethematch.com in the U.S. When you're tested and if you're a match when he requires it, your marrow could be selected. It's a little different than organ donations. The problem is, if and when Oliver gets a bone marrow transplant, it may cure the Aplastic Anemia, but then we will have the DC to contend with. He faces many long battles, but we know we can win this war!
After working many years for the largest constructor in Canada, I was laid off in September 2014. 3 weeks later, Oliver became ill with the unexplained Hepatitis. I have not worked since, as I dedicate every waking minute to being with him, and caring for my daughter as well. My wife has a dog-grooming business which has suffered greatly due to all the missed days with Dr.'s appointments and procedures, as well as emotional stress, etc. Oliver tried to go back to school in November 2014 after coming home from hospital, but the school would call Melitta everyday to pick Oliver up early because he wasn't feeling well. It is impossible to operate a bricks-and-mortar business when you're basically never there! We juggled the school for a few months, but had to pull him out in March after the discovery of his seriously compromised immune system. We have been devastated financially and emotionally. It is impossible to fully comprehend life when you have a sick child unless you do. Every moment of our day is spent thinking and stressing about Oliver, and Scarlett's well-being. She has been affected tremendously by this all, too. When Oliver was in hospital in October, she would run to his room every morning yelling, Ollie Ollie!!, and searching for him. She would force my wife to dress her in his shirts and walk around pointing at it all day saying Ollie. Now, she's almost 3, and has known the Sick Kids Hospital as her second home for more than half of her life.
We have created a FaceBook page for our family called Olliestrong. Any and all funds donated here will go to helping us pay our daily bills and expenses. We would also like to raise awareness to rare blood diseases and hopefully be able to help other families experiencing similar illnesses. Your donations will allow us to continue to be there for Oliver and Scarlett 100%, aiding the stress of mortgage etc...
We have a very long battle ahead of us. Even with a successful Bone Marrow Transplant, Oliver's recovery can be years.
Any donation assistance is greatly appreciated and most importantly your strong consideration to become a bone marrow match is much appreciated and can possibly save the life of my son. From the bottom of our hearts, MY FAMILY THANKS YOU!
Please go to https://www.facebook.com/4Olliestrong?ref=hl to follow Oliver's battle.
On May 7, 2015, things became more complicated and more dire. A condition was discovered in Oliver's DNA, called Dyskerotosis Congenita (DC). This is one of the most complex and serious diseases in the world, with only about 1000 people diagnosed worldwide. The basics are this: We have caps on our chromosomes called Telomeres. These telomeres protect our genes from being mutated, encourage cell division and hold all our secrets to how and why we age. With DC, telomere length is short, essentially prematurely aging the person affected. The person is vulnerable to all kinds of malignancies, pulmonary issues and Aplastic Anemia (Bone Marrow Failure).
Never in my worst nightmares, over the last 6 years since he's been my best friend, could I have imagined this. Everybody says Stay Strong, blah blah blah, but until your child has a disease that is fatal, if not treated properly, you have no idea what staying strong really means until you are faced with it. We have been destroyed financially and we are barely keeping it together. I find myself crying when I look at him having fun because I know how little fun he actually gets. We have dedicated every waking second trying to learn about this disease and trying to determine what else we can do. We will continue to go to the ends of the world for this little man and although it is emotionally and financially straining, we will do whatever it takes, one day at a time. This is the most helpless feeling IN EXISTENCE! I don't even know why I write the private posts on Facebook that I do, I guess because we see so little of anyone outside us 4 now that it's the only way to vent. Please send your thoughts and prayers to my Little Man Oliver, and PLEASE strongly consider donating Bone Marrow.
It is a 1% chance a parent is a marrow match, and Scarlett is the best shot at 25%. And unfortunately, there is no way to only donate to Oliver, if someone is a match. However, if any of you are serious about it (it's a bit of a process), please go to www.Onematch.com in Canada and www.Bethematch.com in the U.S. When you're tested and if you're a match when he requires it, your marrow could be selected. It's a little different than organ donations. The problem is, if and when Oliver gets a bone marrow transplant, it may cure the Aplastic Anemia, but then we will have the DC to contend with. He faces many long battles, but we know we can win this war!
After working many years for the largest constructor in Canada, I was laid off in September 2014. 3 weeks later, Oliver became ill with the unexplained Hepatitis. I have not worked since, as I dedicate every waking minute to being with him, and caring for my daughter as well. My wife has a dog-grooming business which has suffered greatly due to all the missed days with Dr.'s appointments and procedures, as well as emotional stress, etc. Oliver tried to go back to school in November 2014 after coming home from hospital, but the school would call Melitta everyday to pick Oliver up early because he wasn't feeling well. It is impossible to operate a bricks-and-mortar business when you're basically never there! We juggled the school for a few months, but had to pull him out in March after the discovery of his seriously compromised immune system. We have been devastated financially and emotionally. It is impossible to fully comprehend life when you have a sick child unless you do. Every moment of our day is spent thinking and stressing about Oliver, and Scarlett's well-being. She has been affected tremendously by this all, too. When Oliver was in hospital in October, she would run to his room every morning yelling, Ollie Ollie!!, and searching for him. She would force my wife to dress her in his shirts and walk around pointing at it all day saying Ollie. Now, she's almost 3, and has known the Sick Kids Hospital as her second home for more than half of her life.
We have created a FaceBook page for our family called Olliestrong. Any and all funds donated here will go to helping us pay our daily bills and expenses. We would also like to raise awareness to rare blood diseases and hopefully be able to help other families experiencing similar illnesses. Your donations will allow us to continue to be there for Oliver and Scarlett 100%, aiding the stress of mortgage etc...
We have a very long battle ahead of us. Even with a successful Bone Marrow Transplant, Oliver's recovery can be years.
Any donation assistance is greatly appreciated and most importantly your strong consideration to become a bone marrow match is much appreciated and can possibly save the life of my son. From the bottom of our hearts, MY FAMILY THANKS YOU!
Please go to https://www.facebook.com/4Olliestrong?ref=hl to follow Oliver's battle.
Organizer
Rob Ferguson
Organizer
York, ON
