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Photographer’s book, Clint Black’s music help fund Rett syndrome research

By Jake Walker jake.walker@theeagle.com

Hearing your child say “I love you” is a huge moment for parents, but those who have children with Rett syndrome don’t get to hear those words.

Parents, siblings, doctors and other caretakers hope that changes soon — and recent discoveries suggest that might actually be possible.

Rett syndrome is a genetic neurological disorder that affects 1 in 10,000 to 15,000 young girls and becomes apparent after 6 to 18 months of normal early development. It results in a regression that leads to loss of speech and loss of purposeful hand movements and other motor skills. Women and girls with Rett syndrome can’t feed themselves or even verbally express pain.

 

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Rett: There is Hope

The story behind Rett Syndrome is complicated. It involves a devastating genetic affliction that starts with young girls and includes incredible family dynamics, groundbreaking treatment,

David Clements and Kevin Black - Raising a Hand

Dave’s Video

Raising A Hand’s Dave Clements’ personal plea to encourage others to help him and singer-songwriter Kevin Black help fund a cure for Rett syndrome.

The Song – Raising A Hand

Performed Live by Kevin Black Song Written and Sung by Kevin Black. See the complete story concerning this song in our news section.  https://youtu.be/Voa5f7jpZvc?si=9fAeo0wCUEfyV416

Laylee’s Video

Raising a Hand is a nonprofit organization that has created a photography book to help fund the research needed to find a cure for Rett

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