Support Baby Mason Jr

The most devastating form of ALD appears in childhood, generally between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis. The movie “Lorenzo’s Oil” was based off of this disease. I am advocating for this disease so parents will have their children screened for X-ALD at birth. I found out in 2011 that I could be a carrier of X-ALD (X-linked adrenoleukodystrophy). This is an X-linked chromosome disorder that doesn't necessarily affect the women who carry it as severely due to women having a spare X chromosome to compensate for the one that is effected. I had genetic testing performed, my results indicated I posses a gene of unknown significance. Specialists were unable to confirm I was a carrier of X-ALD. X-ALD is rare enough as it is and there hasn't been enough testing done in my family to determine if my gene mutation causes X-ALD. My uncle started out as a healthy child and rapidly deteriorated and died during childhood from X-ALD, it was unknown at the time that he was effected by this disease. My nephew was born with X-ALD and has been treating it with Lorenzo's Oil since childhood; he is now 14 and ranked #1 academically in his entire 9th grade class. Lorenzo’s Oil is a mixture of Olive Oil and Rapeseed Oil. Mason Jr. needs to start treatment with Lorenzo's Oil at 18 months old since this is the only thing known that can slow the progression of X-ALD. We will have to pay for the Oil out of pocket which has to be shipped from the UK. This oil is gonna cost us $400 a month and isn’t currently FDA approved. He is receiving treatment at MUSC in Charleston. He has already been seen by an Endocrinologist, neurologist and is set to see a dietician as well as a bone marrow specialist. He will get his first MRI in February to check for white matter, if any is present then we are going to start the process of getting him a bone marrow transplant. He is going to receive annual MRI scans until the age of 5 at which time they will give him one every 6 months because this is the most crucial time when the disease will show its true form and time is of the essence. Please keep our family in your prayers and donate if you are able to help us give our son the shot at life that he deserves! The oil he needs could mean life or death for him if we can’t pay for it. He has 2 older sisters and parents who love and simply adore him! We have been sacrificing everything to ensure he gets all the medical treatment he needs. We are a one income family as I need to be home with him for all of his many doctors appointments and are very grateful for any donation, no matter how small. Help spread the word so every baby boy is tested at birth for this horrible disease. A simple share of this post can help save lives before it's too late.