STEVE CONLEY JR JOURNEY
Donation protected
Where do I begin... Steve had learning issues as a toddler so I had special education services to help him. I knew something was wrong. I thought maybe ADHD. Doctors told me he was too young to be diagnosed. Steve was very sickly, asthma at 6 months and allergic to dairy until 5 years old. I was always struggling with Steve's energy. My doctor said usually around 6 years of age boys tend to mellow down. At six I took him to see a doctor for his behavior.
The doctor told me Steve had ADHD and we put him on Concerta. He was only on it for about four months because I felt I could control him during the summer months. He was not a disrespectful boy - just very hyper and all over the place. Summer is now over and Steve was going to first grade. Steve was called into the principal's office almost every other week for something he was doing in class. He did not do well in class that year.
The teachers and I both agreed Steve was going to repeat first-grade once again but rather in a new school for learning disabilities. September 28th, 2006 was the first day he attended and his last. I was driving home and his head dropped. I ask "are you okay Steve?" He picked up his head and said: "I'm OK mommy". I felt something was wrong. I called my pediatrician that same afternoon. While she evaluated Steve she decided to order a CATZ scan at the emergency room. My pediatrician knew something was different about Steve's examination... now in the emergency with his father and I waiting for results. The doctor came towards us. The look on his face was like the Kiss of Death...
I asked him was Steve's CATZ scan bad? He said, "Mom it's not good". It was confirmed two days later he had X-linked Adrenoleukodystrophy. Within two weeks Steve stop walking. Many have seen the movie Lorenzo's Oil 1991 starring Nick Nolte and Susan Sarandon. I called for the OIL and they asked what were Steve symptoms. I told them Steve could not walk without assistance. They told me the Lorenzo Oil would not work. My only alternative would be a bone marrow transplant. Steve was in a wheelchair one month later during Halloween. Steve lost his voice by the second month. By the third month, we went to see if Steve could receive a bone marrow transplant at Duke in North Carolina and it wasn't until then, I found out Steve was blind.
Doctors at Duke said Steve was not a candidate for a bone marrow transplant. I asked the doctors how long does he have to live? I was told 3 to 6 months. So I took him home, got a feeding tube and the trache. He almost died in December 2007. Since then Steve has a trachea and a feeding tube and no mobility. I was in a happy and healthy relationship for 18 years. The disease devastated his father Steve Conley Sr. One day he didn't come home, he just stayed at his mother's due to not being able to see his son in such a state. I was taking care of Steve Jr. along with home health aides and then I got nursing assistance.
We lost our home his father owned in New Jersey. Financially we could not afford the mortgage due to the loss of income from me .As I was taking care of our son.. Steve Jr. father became depressed and gave up hope. He later died of a heart attack at 43 years old. 3 years after the exact day of Steve diagnosis..My life has never been the same since. Steve has lived 13 years now with this devastating disease. .I have assisted in using my story to help push SENATE BILL NO. 465 Public Act No. 13-242 AN ACT CONCERNING NEWBORN SCREENING FOR ADRENOLEUKODYSTROPHY, which was signed into law in July 2013..
****UPDATE ****
Due to Steve Social Security benefits he is not eligible for State Medicaid and is on Medicare which does not provide nursing, transportation to the doctor's appointments and supplies for me to continue on with Steve's care.. I am raising funds now to hire an attorney to assist me in receiving the best alternative for insurance.. and a specialized vehicle to get him to appointments, and if possible a Electric wheelchair because I am no longer able to push him manually. Please whatever you can contribute it will be greatly appreciated.
A HEARTBROKEN MOTHER
I am the fundraiser ..for my SON
The doctor told me Steve had ADHD and we put him on Concerta. He was only on it for about four months because I felt I could control him during the summer months. He was not a disrespectful boy - just very hyper and all over the place. Summer is now over and Steve was going to first grade. Steve was called into the principal's office almost every other week for something he was doing in class. He did not do well in class that year.
The teachers and I both agreed Steve was going to repeat first-grade once again but rather in a new school for learning disabilities. September 28th, 2006 was the first day he attended and his last. I was driving home and his head dropped. I ask "are you okay Steve?" He picked up his head and said: "I'm OK mommy". I felt something was wrong. I called my pediatrician that same afternoon. While she evaluated Steve she decided to order a CATZ scan at the emergency room. My pediatrician knew something was different about Steve's examination... now in the emergency with his father and I waiting for results. The doctor came towards us. The look on his face was like the Kiss of Death...
I asked him was Steve's CATZ scan bad? He said, "Mom it's not good". It was confirmed two days later he had X-linked Adrenoleukodystrophy. Within two weeks Steve stop walking. Many have seen the movie Lorenzo's Oil 1991 starring Nick Nolte and Susan Sarandon. I called for the OIL and they asked what were Steve symptoms. I told them Steve could not walk without assistance. They told me the Lorenzo Oil would not work. My only alternative would be a bone marrow transplant. Steve was in a wheelchair one month later during Halloween. Steve lost his voice by the second month. By the third month, we went to see if Steve could receive a bone marrow transplant at Duke in North Carolina and it wasn't until then, I found out Steve was blind.
Doctors at Duke said Steve was not a candidate for a bone marrow transplant. I asked the doctors how long does he have to live? I was told 3 to 6 months. So I took him home, got a feeding tube and the trache. He almost died in December 2007. Since then Steve has a trachea and a feeding tube and no mobility. I was in a happy and healthy relationship for 18 years. The disease devastated his father Steve Conley Sr. One day he didn't come home, he just stayed at his mother's due to not being able to see his son in such a state. I was taking care of Steve Jr. along with home health aides and then I got nursing assistance.
We lost our home his father owned in New Jersey. Financially we could not afford the mortgage due to the loss of income from me .As I was taking care of our son.. Steve Jr. father became depressed and gave up hope. He later died of a heart attack at 43 years old. 3 years after the exact day of Steve diagnosis..My life has never been the same since. Steve has lived 13 years now with this devastating disease. .I have assisted in using my story to help push SENATE BILL NO. 465 Public Act No. 13-242 AN ACT CONCERNING NEWBORN SCREENING FOR ADRENOLEUKODYSTROPHY, which was signed into law in July 2013..
****UPDATE ****
Due to Steve Social Security benefits he is not eligible for State Medicaid and is on Medicare which does not provide nursing, transportation to the doctor's appointments and supplies for me to continue on with Steve's care.. I am raising funds now to hire an attorney to assist me in receiving the best alternative for insurance.. and a specialized vehicle to get him to appointments, and if possible a Electric wheelchair because I am no longer able to push him manually. Please whatever you can contribute it will be greatly appreciated.
A HEARTBROKEN MOTHER
I am the fundraiser ..for my SON
Organizer
Lee Giordano
Organizer
New York, NY