Thursday, July 31, 2008

State-funded services help child | Twin Cities Daily Planet | Minneapolis - St. Paul

State-funded services help child | Twin Cities Daily Planet | Minneapolis - St. Paul:

"Several days ago, my twelve year-old son, Erich, sat in front of our church congregation and played the guitar to the tune of “He’s Got The Whole World In His Hands.” It was one of those hand-on-your-heart moments, and it simply took my breath away. To many it would have seemed a normal, everyday occurrence, but for those who know Erich, they understood what it has taken for him to confidently strum a tune on a guitar.

Two days after his first birthday, Erich was diagnosed with Williams Syndrome, a genetic disorder affecting the seventh chromosome. As a result of this syndrome, Erich has many developmental disabilities, especially fine and gross motor as well as speech delays. However, thanks to state-funded human services, Erich has developed skills that have greatly enriched his life."

Family Looks for Help in Building Addition Onto Home for WS Son

CBS 7 - Your Eye on West Texas

Trace sufferes from Williams Syndrome, a genetic disorder which formed his arteries too small; making it difficult to breath and even harder to play.

"We're supposed to limit his activity and its hard to do with having older brothers and wanting to play and stuff."

The Covington's home is also a challenge. Trace doesn't have a bedroom and in between playing the piano and riding piggy back on his big brother's bike, Trace has few places to recoup.

"We're just wanting to have an environment so he can go and have fun instead of going outside and running and playing and stuff."

So, Trace's parents contacted the Make A Wish Foundation, in hopes of giving their son his first bedroom.

"It tears at our hearts that he's having to do without."

Unfortunately, just when they thought Trace's wish was granted, Make A Wish informed them otherwise.

Wednesday, July 30, 2008

Ipswich’s Hanwell a true Special Olympics champion - Ipswich, MA - Ipswich Chronicle

Ipswich’s Hanwell a true Special Olympics champion - Ipswich, MA - Ipswich Chronicle:

"Alyssa Hanwell loves to roller skate — in competition, only, though.

The longtime Special Olympics competitor typically puts away the wheels when the training season and state Special Olympics are past."

Vocabulary Abilities of Children With Williams Syndrome: Strengths, Weaknesses, and Relation to Visuospatial Construction Ability -- Mervis and John 5

Vocabulary Abilities of Children With Williams Syndrome: Strengths, Weaknesses, and Relation to Visuospatial Construction Ability -- Mervis and John 51 (4): 967 -- Journal of Speech, Language,:

"Conclusions: Concrete vocabulary is a relative strength for children with WS; relational vocabulary ability is very limited and is at about the level of visuospatial construction ability. Accurate determination of group comparison results depends on stringent group matching."

Tuesday, July 8, 2008

Oak View woman gets chance to sing with Wynonna Judd : Lifestyle : Ventura County Star

Oak View woman gets chance to sing with Wynonna Judd : Lifestyle : Ventura County Star:

"Born with a rare genetic condition, Trieana Moon is nonetheless honing her passion for music with her own CD and singing onstage with her idol, Wynonna Judd.

'It was my dream come true to see her and perform with her; it was amazing,' said Moon, 33, of Oak View, who sang 'Amazing Grace' with Judd this spring at Ryman Auditorium in Nashville, Tenn.

'I'd like to go back to Nashville and see Wynonna and perform with her again,' Moon said. 'She's got a voice like an angel. That would be my greatest joy, to work with a beautiful country singer like her because she's my idol.'

Moon has Williams syndrome, a condition of unknown origin that causes mental retardation and heart abnormalities and shares some similarities with autism."

Family Prepares to Adopt Williams Syndrome Girl from Taiwan

The Becks Family

Best wishes to the Becks!

Teresa Posts on Her Williams Syndrome Barbecue

Clare's Journey: Williams Syndrome Barbecue