Ride to Give - Help Henry See and Hear
$3,862 Raised
103% of $3.8k goal
250 contributors
0 days left
Ended Aug 11, 2014
Please help us provide an Intervener for Henry, who suffers from deaf blindness (Usher Syndrome), while he attends summer camp this August. More ...

Kim and Philip Norton had one healthy son and were eager to welcome a second. But when Henry arrived he was born with profound bilateral sensorineural hearing loss. Although overwhelmed with this news, his parents embraced the opportunity to meet Henry's hearing loss with learning a new language. The entire family, big brother Jack included, started to learn American Sign Language. He began receiving Early Intervention services at 3 months old and was fitted with his first set of hearing aids at 4 months old. The family struggled with the fact that Henry was deaf and were determined to understand deaf culture and what Henry would need to be successful. But that was not the only challenge they would face.

Before long Kim and Philip started suspecting that Henry was having problems with his vision. After genetic testing they got the horrible news that Henry has Usher Syndrome Type 2c: hereditary deafblindness. Usher Syndrome is rare, but Type 2c is rarer still. It has been characterized by deafness and typical sight at birth with a rapid degeneration of the retina (Retinitis Pigmentosa) before age 10. In Henry's case, at 5-years-old he had 180 degrees of vision and at 6-years-old he has 10 degrees to 15 degrees of vision remaining. He is expected to lose another 5 degrees before stabilizing. That's panoramic sight compared with looking through a straw.

Determined to not only help Henry but every child diagnosed with Usher syndrome, Kim and Philip started the Help Henry See and Hear Foundation. This year they raised $21,000 and were able to create the first ever scholarship for a Deafblind Intervener (think Ann Sullivan for Helen Keller) at Utah State University, they gave 25% to the Usher Syndrome Coalition, and they have now sponsored 5 children who are deaf, blind or deaf blind to go to camp for a week at Cedar Run Wildlife refuge, a fellow non profit.

Although they raised enough to pay for an Intervener to go with Henry to camp with his brother (which started yesterday), Ride to Give wants to pay for it. By us doing so, Henry's Foundation will now have the funds to help another mom with 2 deaf girls who is unable to receive any benefit under her insurance policy to replace her girls' 5-year-old hearing aids. 

Please help us help Henry to see and hear, and make a difference for other children with Usher Syndrome in the process.

You can follow Henry on Facebook here: https://www.facebook.com/HelpHenrySeeAndHear

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