Help for Joey

Dear friends.

My name is Joe Brocato, and I am a retired firefighter from Baltimore, Maryland. I am writing on behalf of my son Tony and my grandson, Joey, who will be turning 7 on April 2nd. Tony is also a firefighter serving in Baltimore City, as well as a Marine veteran. Joey is a beautiful 1st grader, a bright light with a big personality who just lost his first baby tooth.

About a year and a half ago Joey was diagnosed with a rare disease known as adrenoleukodystrophy or ALD for short. ALD is a multisystem disease, but most prominently affects both the central and peripheral nervous systems, which are responsible for all of the body’s voluntary and involuntary functions. Damage to the brain results in blindness, seizures, and hyperactivity. Other effects include problems with speaking, listening, and understanding verbal instructions. Damage to the spinal cord results in the loss of the ability to walk and maintain normal breathing. Onset of the disease generally occurs between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they may simply show minor behavioral problems, such as withdrawal or difficulty concentrating, vision problems, or start to have coordination issues. Gradually, as the disease spreads throughout the brain, their symptoms grow worse, including blindness, deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to a vegetative state or death usually within 2-5 years of diagnosis. As of this time, there has been very little neurological damage and the quicker the BMT, the less damage.

Joey has been receiving MRI’s between 3 and 6 months apart since the diagnosis. Based on his most recent MRI it was decided that he was a candidate for a bone marrow transplant or BMT. BMT, also known as a blood stem cell transplant, can stop the ALD from causing more damage. It replaces the blood-forming cells (stem cells) that are missing the important protein with healthy ones. With healthy blood-forming cells, the body is able to break down fat-based substances normally. Early diagnosis and treatment will give Joey the best chance at stopping the ALD and give him a better quality of life. Joey’s doctor is a world-renowned expert on ALD based at the Masonic Children’s Hospital in Minneapolis Minnesota. The BMT is being scheduled for Spring, probably around May. This treatment will consist of chemotherapy to destroy all the diseased blood cells followed up by the BMT. Anyone familiar with chemo knows the side effects associated with it. The treatment takes about 4 months at which time Tony and Joey will live in Minnesota. Because of the time involved, Tony will be taking a leave of absence from his work. He and eventually Joey will be living at the Ronald McDonald House near the hospital. When they return to Maryland there will be much follow-up on an ongoing basis.

As you may imagine, this diagnosis has been devastating for our family. Joey is the light of Tony’s life and is also a bright light to his grandparents and family. There are many decisions to be made, logistics to be worked out and things to consider, and the next 6 -12 months will be critical. Tony is a single dad with sole custody and as such is a one-income household. The financial obligations are going to be many and while family will be helping it won’t be enough, hence the reason for this request.

The road ahead will be a long and difficult one. I am humbly asking for your financial donation to help Tony and Joey through this most difficult time; to ease their burden and worry for the immediate future. Your gift will be used to support them in Minneapolis in the months to come and to help us ensure they have a life to come back to in Maryland.

Thank you for your consideration and thank you, in advance, for your help.

Joe Brocato