Group of moms use cooking talent to help battle a disorder

October 29, 2010 3:14:03 PM PDT
It can be a heartbreaking experience for a parent to see a normal baby stop developing and then not know what is wrong. This happens in a little known disorder known as Rett Syndrome. One group of moms decided their cooking talent could help those with it - and it is one of their own.

They call themselves the Hotsy Totsy Book Club, all fun moms who for 7 years have enjoyed reading books together and sharing the delicious eats they bring to the table. Then they got an idea.

"We love to cook. We love to eat. It was a no brainer," Robin Diamond said.

The no brainer was a cookbook with their delicious recipes. It has been selling well online and in their community.

In addition, every penny they make goes to fund research for Rett Syndrome. Why?

This beautiful young girl, Abby Diamond has Rett Syndrome. She is Robin's younger daughter.

Robin says Abby was a normal developing baby at first, but did not talk and only began walking at 21 months.

"They told us when she starts walking, words will come. And she started walking, but the words never came," Diamond said.

Rett Syndrome affects mostly little girls. Many of them result more severely disabled than Abby. Some cannot even walk.

While it falls into the autism spectrum, Rett Syndrome is more specific. Hand gestures are very prevalent. However, the big difference is that in this disorder the children can be tested for the Rett Syndrome gene.

It's a blood test, which tests for the gene automatically. It is known as the mecp2 gene.

Moreover, that gene now gives researchers of Rett Syndrome a target for possible therapy or even prevention. It gives a book club of friends a goal for fundraising. In addition, it gives a Rett Syndrome's mom a dream.

"Dream for a cure, dream she could communicate with me," Diamond said.

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ONLINE:

www.blurb.com/bookstore/detail/1614225
www.rettsyndrome.org
www.reverserett.org


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