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Friday, March 25, 2011

Make A Wish!!!

In November of 2010, I submitted Perrin's name to Make A Wish after we got the diagnosis of blepharospasm and Meige's syndrome. Upon research done by my husband and I, we found out that Perrin has the degenerative version of blepharospasm. It is a fairly rare disease, affecting only one in every 20,000 people in the United States.

Some of our research turned up these facts:
-Blepharospasm usually begins gradually with excessive blinking and/or eye irritation. In the early stages it may only occur with specific precipitating stressors, such as bright lights, fatigue, and emotional tension. As the condition progresses, it occurs frequently during the day. The spasms disappear in sleep, and some people find that after a good night's sleep, the spasms don't appear for several hours after waking. Concentrating on a specific task may reduce the frequency of the spasms. As the condition progresses, the spasms may intensify so that when they occur, the patient is functionally blind; and the eyelids may remain forcefully closed for several hours at a time.
-Blepharospasm is thought to be due to abnormal functioning of the basal ganglia which are situated at the base of the brain.
-Blepharospasm can occur with dystonia affecting the mouth and/or jaw (oromandibular dystonia, Meige syndrome). In such cases, spasms of the eyelids are accompanied by jaw clenching or mouth opening, grimacing, and tongue protrusion.
-There is, unfortunately, no cure.

So it is a fairly hard disease for him to have at 8 years old. It affects him when he's tired, stressed or nervous. On March 10, 2011, I decided to call the local chapter of Make A Wish back to check on the progress of everything. Great News!! Perrin had been deemed medically eligible for his wish almost immediately back in November. They sent a letter, which I guess was lost in the mail. We also had been already paired with volunteers, or "Wish Granters", They also asked if I happened to know what his wish was. Anyone who knows Perrin knew what it was right away. He is a huge star wars nerd. His wish is to go to Disney World for Star Wars Weekend to meet Darth Vader, the Stormtroopers and the bounty hunters. We met with our Wish Granters on March 15, 2011 for 2 hours!! We signed a bunch of paperwork and they were talking about possibly sending him in May 2011. Since Star Wars Weekend is only May 20-22 and May 27-29, we chose the beginning of June since he will be out of school by then. So we set our dates for June 2-8.

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