Calling All Anglers: Please Help Christopher’s Crusade against ALD

Calling All Anglers: Please Help Christopher’s Crusade against ALD

On Thursday, February 9th, 2017, I was standing on my front porch with my wife discussing the snow we had just received. We were talking about what a great landlord our neighbor’s had across the street as we watched the landlord snowblow the sidewalks and driveways. As we were watching, Bill stopped his snowblower and walked across the street to say hello. The normal greeting wasn’t the same and Bill shared with us some devastating news.

Bill and his wife Darcy have one child, Christopher. Christopher is an eight year old boy that was full of energy and very well mannered everytime we saw him, many times shouting across the street, back and forth with my son Gavin. They would play together on occasion when Bill and myself were outside cooking or doing yard work.

The news Bill shared with my wife and I just ripped through our hearts. On December 28, 2016, Christopher, had been diagnosed with Adrenoleukodystrophy, ALD, a rare and fatal genetic brain disease that affects only 1 in 18,000 people. This disease distroys the protective sheath that surrounds the brain’s nerve cells that allow us to think and control our muscles. Like other boys with this stage of ALD, Christopher will rapidly start to regress with worsening symptoms including, seizures, loss of muscle control, and progressive dementia. Christopher now has hearing and vision loss and has shown difficulty with balance. There have been an abundance of expenses involved in diagnosing this disease, treatment, loss of work and the ongoing trips to Mass General. Christopher will continue to need treatment that will include medication, wheelchairs, ramps, etc. There is no cure at this stage and there is no way of knowing how fast this disease will progress. Your donation and support will allow this family to focus on the time they have left together and provide love and support to their son.

A GoFundMe page has been set up for Christopher James Gray, run by his mother Darcy. Please consider making a donation to help Bill, Darcy and Christopher.


A benefit has also been scheduled with limited tickets remaining. Please contact Mikki for availability details.

DATE: Sunday April, 2, 2017

TIME: 12pm-4pm

LOCATION: Chute Gates – 372 Main St. Terryville, CT

It will be $20 a ticket sold in advance or at the door. Contact Mikki at 860-978-8926 for tickets.

EVENT LINK


 

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