Posted in Must Reads!

Tribute to children who passed away since February 2016’s Leukodystrophy Slideshow & September 2016’s slideshows!

In February 2016, we updated our Leukodystrophy slideshow we made in September 2013. To watch the slideshow we made in February 2016, click here. To watch the slideshow we made in September 2013, click here. *Note: “The Fight Against Krabbe Disease” Facebook page mentioned in our September 2013 slideshow has since been deleted and merged with Hope Alive Ministry.

Since our September 2013 slideshow, the following children out of 17 children included have passed away; 5 of the children that were included are still battling Leukodystrophies as of February 2017:

1. Alyjah Williams – She passed away from Krabbe Disease on March 18, 2014 at 18 months and 1 day old. 

2. Jaylah Donaire-Bechtel – She passed away from Krabbe Disease on July 27, 2014 at 2 years old.

3. Hannah Ginion – She passed away from Krabbe Disease on December 28, 2014 at just 18 days shy from her 2nd birthday.

4. Addilyn Davis – She passed away from Krabbe Disease on October 21, 2015 at 4 years old. 

5. Marshall Wilson – He passed away from Krabbe Disease on March 5, 2016 at 6 1/2 years old. 

Since our February 2016 slideshow, the following children out of 30 total children included have passed away; 11 children that were included are still battling Leukodystrophies as of February 2017:

1. Marshall Wilson – He passed away from Krabbe Disease on March 5, 2016 at 6 1/2 years old.

2. Tori Brackbill – She passed away from Krabbe Disease on March 27, 2016 at 19 months and 27 days.

3. Max Barnett – He passed away from Krabbe Disease on June 24, 2016 at 2 1/2 years old.

4. Tahron Jr. Herring “TJ”– He passed away from Adrenoleukodystrophy (ALD) on September 5, 2016 at 9 years old.

5. Eden Brooks – She passed away from Metachromatic Leukodystrophy (MLD) on November 4, 2016 at almost 8 years old. 

6. Donnie Jr. Shuler “DJ”– He passed away from Adrenoleukodystrophy (ALD) on November 24, 2016 at 10 1/2 years old. DJ is TJ and Tyree’s older cousin. Tyree is still battling ALD. 

In September 2016, we made another Leukodystrophy slideshow since 3 of the children included in the slideshow have passed away. A few days later, TJ Herring passed away, so we had to update it again. Since our updated September Leukodystrophy slideshow, DJ Shuler and Eden Brooks passed away. Since Rare Disease Day is on February 28, we especially want to remember those who passed away from rare diseases especially Leukodystrophies. All children matter and we will not stop fighting until there is a cure. We will always fight in memory of Alyjah Williams, Jaylah Donaire-Bechtel, Hannah Ginion, Addilyn Davis, Marshall Wilson, Tori Brackbill, Max Barnett, TJ Herring, Eden Brooks, DJ Shuler and all children who have passed away and all the children still battling. 

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