Jogging Stroller for Connor
Donation protected
Our journey began on May 23rd in 1999. It was a beautiful Sunday morning. My precious son, Connor James Hernandez was born. Connor was my second pregnancy, but my third child. Connor has older twin brothers, Joshua and Jacob. I had a non emergent scheduled ceserian section due to Connor being breech. Everything seemed "normal" at the time of his glorious birth. However, we will soon find out that there is nothing "normal" about sweet Connor.
My name is Tracey Hernandez. I am Connor's mother. Connor was having a difficult time once I got him home. He was not gaining weight, eventhough he was eating. He also did not cry or even move his body. At 3 months old, I spoke to his doctor about my concerns. He agreed that there was something not quite right about Connor. He suggested maybe he had Cerebral Palsy, Autism, and that he may be blind and deaf. My heart sank with all these possible diagnosis. After visiting numerous specialists, the only thing that they could all agree on was that Connor was profoundly mentally and physically handicapped, I was told that it would be a miracle if Connor survived to celebrate his 3rd birthday. Connor was lableled a mystery. No one knew what was wrong with him. At the age of 2, Connor suffered his first grand mal seizure. I knew at this point, that I needed to leave my career and stay home and care full time for my sweet Connor. At the age of 3, Connor received his first wheelchair.
Connor survived to the age of 4. He has surpassed his life expectancy. However, he is beginning to fail to thrive. He is so sick and again, no answers. The doctors told me to keep him comfortable and love him until he passes. During this time, I had taken Connor to a Geneticist. She explained that she had no idea what could be causing all the issues that Connor was having. She did, however, order a few blood tests. A week after our visit with her, I received a voicemail explaining that one of the tests that she ordered had come back with the answer. To please call the office to schedule an appointment. They could not get us in until 2 weeks away. During this time, Connor was literally fighting to breath. I rushed him into the Emergency room on a warm starry night on June 1, 2003. Upon examination and blood work, the doctor approached me with a very sad look. He could barely speak nor look me in the eye. He explained that the Oncologist would be in to speak with me. That is when I smiled at him, took a deep breath and said "you are in the wrong room, my son has a genetic disorder, not cancer". He then said those words that no one should ever hear. "Your son has cancer". That night, my sweet Connor was diagnosed with High Risk Lymphoblastic Leukemia. I was told that he would not survive the night. Well, in true Connor fashion, he did survive the night. The doctor came into Connor's room the next morning to discuss treatment. At that time she explained that some genetic syndromes react adversely to chemotherapy. She needed to know the name of Connor's syndrome that I did not know...yet. She called the geneticist. On the same day as his cancer diagnosis, we finally recieved the answer to his mystery syndrome. Connor had an extremely rare form of Wolf-Hirschhorn syndrome. Again, I was told that he should not be alive. Connor indured 3 years of chemotherapy and radiation. Remission was obtained and we could finally focus on his syndrome, which has no treatment or cure. After being off treatment for his cancer for almost 2 years, I heard those horrible words...AGAIN! "Your son has cancer". Connor and I spent 7 months straight in the hospital. Again, I was told that he would not survive this. Connor made it to December 2, 2010. At that time he was diagnosed with liver and kidney failure. The docotor and I felt that it was in the best interest of Connor to stop chemotherapy. He was sent home on Hospice. Again, I was told that he would not survive. After 2 years of being on Hospice care, Connor was discharged from their services. Another miracle.
A little over 5 years later, Connor is now 16 years old and is still in remission. His seizures are not as frequant and he is thriving. That is amazing news, but it also has come with consiquences. Connor weighs in at 80 pounds and is just shy of 5 feet tall. He is non verbal and is unable to walk. I have to lift him to transport him. He is like lifting up an 80 pound sack of potatoes. After years of lifting him, it has begun to take its toll on my body. It is also becoming more and more dangerous for me to lift him and to try to safely maneuver him into the car. Connor has not survived all this time to have to sit at home, because going anywhere in the car is just too difficult and unsafe. Wheelchair accessible vans are extremely expensive. Being that I am Connor's full time caregiver, I do not have the resources to make such a huge purchase. This is where Connor needs your help. Please consider helping out Connor in his quest to obtain a safe and reliable wheelchair van. Thank you for taking the time to read Connor's amazing miracle journey. Connor thanks you all for any help that you can give.
On Wednesday January 6th 2016, Connor's grandma passed away. It was her wish that in lieu of flowers, that donations be made to Connor's wheelchair van fund in her honor. Thank you.
My name is Tracey Hernandez. I am Connor's mother. Connor was having a difficult time once I got him home. He was not gaining weight, eventhough he was eating. He also did not cry or even move his body. At 3 months old, I spoke to his doctor about my concerns. He agreed that there was something not quite right about Connor. He suggested maybe he had Cerebral Palsy, Autism, and that he may be blind and deaf. My heart sank with all these possible diagnosis. After visiting numerous specialists, the only thing that they could all agree on was that Connor was profoundly mentally and physically handicapped, I was told that it would be a miracle if Connor survived to celebrate his 3rd birthday. Connor was lableled a mystery. No one knew what was wrong with him. At the age of 2, Connor suffered his first grand mal seizure. I knew at this point, that I needed to leave my career and stay home and care full time for my sweet Connor. At the age of 3, Connor received his first wheelchair.
Connor survived to the age of 4. He has surpassed his life expectancy. However, he is beginning to fail to thrive. He is so sick and again, no answers. The doctors told me to keep him comfortable and love him until he passes. During this time, I had taken Connor to a Geneticist. She explained that she had no idea what could be causing all the issues that Connor was having. She did, however, order a few blood tests. A week after our visit with her, I received a voicemail explaining that one of the tests that she ordered had come back with the answer. To please call the office to schedule an appointment. They could not get us in until 2 weeks away. During this time, Connor was literally fighting to breath. I rushed him into the Emergency room on a warm starry night on June 1, 2003. Upon examination and blood work, the doctor approached me with a very sad look. He could barely speak nor look me in the eye. He explained that the Oncologist would be in to speak with me. That is when I smiled at him, took a deep breath and said "you are in the wrong room, my son has a genetic disorder, not cancer". He then said those words that no one should ever hear. "Your son has cancer". That night, my sweet Connor was diagnosed with High Risk Lymphoblastic Leukemia. I was told that he would not survive the night. Well, in true Connor fashion, he did survive the night. The doctor came into Connor's room the next morning to discuss treatment. At that time she explained that some genetic syndromes react adversely to chemotherapy. She needed to know the name of Connor's syndrome that I did not know...yet. She called the geneticist. On the same day as his cancer diagnosis, we finally recieved the answer to his mystery syndrome. Connor had an extremely rare form of Wolf-Hirschhorn syndrome. Again, I was told that he should not be alive. Connor indured 3 years of chemotherapy and radiation. Remission was obtained and we could finally focus on his syndrome, which has no treatment or cure. After being off treatment for his cancer for almost 2 years, I heard those horrible words...AGAIN! "Your son has cancer". Connor and I spent 7 months straight in the hospital. Again, I was told that he would not survive this. Connor made it to December 2, 2010. At that time he was diagnosed with liver and kidney failure. The docotor and I felt that it was in the best interest of Connor to stop chemotherapy. He was sent home on Hospice. Again, I was told that he would not survive. After 2 years of being on Hospice care, Connor was discharged from their services. Another miracle.
A little over 5 years later, Connor is now 16 years old and is still in remission. His seizures are not as frequant and he is thriving. That is amazing news, but it also has come with consiquences. Connor weighs in at 80 pounds and is just shy of 5 feet tall. He is non verbal and is unable to walk. I have to lift him to transport him. He is like lifting up an 80 pound sack of potatoes. After years of lifting him, it has begun to take its toll on my body. It is also becoming more and more dangerous for me to lift him and to try to safely maneuver him into the car. Connor has not survived all this time to have to sit at home, because going anywhere in the car is just too difficult and unsafe. Wheelchair accessible vans are extremely expensive. Being that I am Connor's full time caregiver, I do not have the resources to make such a huge purchase. This is where Connor needs your help. Please consider helping out Connor in his quest to obtain a safe and reliable wheelchair van. Thank you for taking the time to read Connor's amazing miracle journey. Connor thanks you all for any help that you can give.
On Wednesday January 6th 2016, Connor's grandma passed away. It was her wish that in lieu of flowers, that donations be made to Connor's wheelchair van fund in her honor. Thank you.
Organizer
Tracey Lynn Cramer
Organizer
Riverview, FL