"Westley's Wish"

"Westley's Wish" This page has been created to help bring awareness to Batten Disease and support Westley and his fam There is currently NO CURE for this disease.
(1)

As many of you all know Westley was diagnosed October(2010)with Late Infantile Batten Disease. Batten Disease is a genetic neurological disease that brings an early death to each child it affects. Over time, children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and unable to communica

te. Just in April(2011) Westley had experimental brain surgery done at the New York-Presbyterian/Weill Cornell Medical Center. The surgery involved putting the gene that Westley is missing into his brain. Only time will tell if this will help him or not. This surgery is to just slow down the progression of the disease it does not cure it. According to the Batten Disease Support and Research Association, approximately 30 children will be diagnosed with Batten Disease this year, and about the same number will also pass away before the end of 2011. Please join our family in bringing awareness to this awful disease. There will be a few fundraisers taking place this summer for Westley! We will keep everyone posted on these dates. Our family has realized that we are currently in a race against time and we will never give up this race until there is a cure. Charles Darwin once said, “A man who dares to waste one hour of time has not discovered the value of life.” Our family can say we have found the value of life because of Westley…:)

God Bless,
The McKinley's

06/07/2026
We booked our hotel today for the Batten Conference in July. Willie and I haven’t been back to the conference since West...
04/19/2026

We booked our hotel today for the Batten Conference in July. Willie and I haven’t been back to the conference since Westley passed in 2022.
The pups will be going with us. Im sure they will be an asset for some therapy.
On Sunday of the conference they have a memorial ceremony for the children that have passed away, we haven’t to conference in 4years and we need to celebrate Westley.

🐥 HAPPY EASTER 🐰Just a few Easter throwbacks.
04/06/2026

🐥 HAPPY EASTER 🐰
Just a few Easter throwbacks.

03/20/2026

We miss you so much. 💚

02/28/2026

Past supporters who wore camo on Rare Disease day.

Please say a prayer for her family as they lay her to rest. Wanda was very sweet and devoted to us for her support. She ...
02/27/2026

Please say a prayer for her family as they lay her to rest. Wanda was very sweet and devoted to us for her support. She loved Westley very much. Every year for Rare Disease day we would ask friends to wear camo and post pictures to his page. Wanda never missed her opportunity to do this. 💚🖤🩶💚🤎💚🩶🖤🤎💚🤎🩶🖤🤎

Miss you Monday…. Miss those sweet brown eyes and smile. Wish i could kiss those cheeks. 💋
02/17/2026

Miss you Monday…. Miss those sweet brown eyes and smile. Wish i could kiss those cheeks. 💋

Westley Wednesday. For today we will post pictures of Westley and his Dad, since Dads birthday is this week. The two had...
02/05/2026

Westley Wednesday. For today we will post pictures of Westley and his Dad, since Dads birthday is this week. The two had so much fun being in the outdoors. These are a few of my favorites…🥰

Here is a book with some art work from the kids with batten disease in a story from a family in Australia.
02/01/2026

Here is a book with some art work from the kids with batten disease in a story from a family in Australia.

Address

Logan, OH

Website

Alerts

Be the first to know and let us send you an email when "Westley's Wish" posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to "Westley's Wish":

Shortcuts

Share

Category