This picture below is September 2009 before Brian was diagnosed with Addison's Disease & Adrenoleukodystrophy. And the picture next to it is Brian September 2010.
Picture below, Brian 15 yrs old. His health has been good except for seizures once in awhile.
Picture below is Brian age 18! He's doing AWESOME!!!
Hi, this is Brian, he is
a very active 10 year old boy that loves climbing trees, playing
Nintendo DS, Playing Wii,Transformers, Soccer, Legos & Bionicles. He faces a
battle that most of us won't face until we are
much older... the battle for his life. Please keep Brian in your prayers & pray that he beats this Disease!!!!! Thanks.
Brian finally decided on his Make A Wish. He is going to Disneyland, California Adventure, Medieval Times, Legoland Water Park and to Seaworld to swim with the dolphins. He is excited and can't wait to go. Brian has been doing really good, MRI Aug. 16, 2011 to see if disease is progressing. Please say a prayer the progression has stopped.
Brian's MRI showed some changes in his brain, waiting to hear back from his doctor to tell us exactly what he saw. Will update as soon as we hear.
Update : Brian's MRI showed no changes that means the disease is not progressing and that's FANTASTIC!!!!!!! Also Brian is on his Make A Wish this week, Hopefully I can put some pictures up soon.
As to date Brian is doing AWESOME!!! Cord blood transplant seems to have stopped the progression of the disease. He takes steroids and seizure medicine and has IVIG once a month to boost his immune system.
Brian has been diagnosed with Addison's Disease and X- Linked ALD
(X-LNKED ADRENOLEUKODYSTROPHY).
Adrenoleukodystrophy (ALD) is a rare and fatal genetic disorder that affects the nerves and adrenal glands. In people with ALD, the enzymes do not properly break down fatty acids. This results in an accumulation of high levels of saturated fatty acids in the brain and the adrenal cortex, which causes degeneration of the myelin sheath (insulation covering on nerves) and the adrenal gland.Currently, there is no known way to prevent ALD.
This terrible disease may claim his life in the next 2 or 3 years.
Brian had a Cord Blood Transplant on February 24, 2010, Cord Blood was used which has a better chance for it to work. This isn't a cure but hopefully it will stop the progression of this terrible disease and give him more time to enjoy life.
Adrenoleukodystrophy,
or ALD, is a genetic neurological
disorder that affects 1 in every 18,000 boys worldwide. X-linked ALD occurs when the patient inherits the abnormal gene from
one or both parents. Since males only have one X chromosome, they will
have the disease if they inherit one copy of the mutated X chromosome.
Since females have two X chromosomes, they must inherit two copies of
the mutated chromosome in order to have the disease. If females have
just one copy of the mutated gene, they are called carriers. Carriers of
ALD may experience mild symptoms of ALD. This is because the normal
copy of the gene can partially compensate for the abnormal one in females. Symptoms of X-linked ALD may develop in childhood or adulthood. X-linked ALD is the most
severe form of the disease. This type only affects boys. Symptoms
usually begin between the ages of 2 to 10 years of age. About 35% of
patients can experience severe symptoms during the early phase. On
average, death results in 2 years, although some patients may live a
couple of decades. Initial symptoms include:
As the disease progresses, more serious symptoms develop.
These include:
If loss of brain function becomes severe, patients with ALD may enter into a vegetative state. A vegetative state is a condition of unconsciousness in which an individual is alive, but can't move or respond to his or her surroundings.
Tests for this Disease are as follows........
Please feel free to leave your comments for Brian and his family on our comments page. Thanks
I want to send a special Thank You to Dave N. who asks Brian's grandpa every day how he is doing. Dave has never met Brian but has been very thoughtful and caring. Brian's family wants to say Thank You for what you did for them. I know it has been awhile but it wasn't forgotten. They have been dealing with some other issues and plan on Thanking you in person hopefully soon.