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Three local families affected by Rett syndrome

READ MORE: Three local families affected by Rett syndrome
Rett syndrome affects thousands of girls and can be devastating for some parents to discover in their children. Three local families have dealt with their grief by spreading the word about the disorder. Their daughters all have Rett syndrome, a rare neurological disorder that affects their communication and motor skills. The disorder strikes 1 in 22,000 females. Becky Hudson's daughter Abbey, now 16-years-old, was diagnosed at age three. “We had a number of professionals say to us 'we don't think this is Rett syndrome, so I spent a lot of my working days not knowing what was happening with her," said Becky. When Abbey was diagnosed with Rett, Becky said she felt both grief and relief to know that Abbey would have a long battle ahead of her. "I wasn't shocked by the diagnosis. I think I knew more of what we had in store and what would be taken away from her," Becky said. Becky bonded with other parents dealing with the same thing. Shelly Mansfield has a two-year-old who was diagnosed with the disorder after the gene that causes Rett syndrome was discovered in a blood test. Shelly said, "While it was a very hard thing to learn, it was also an important thing to find out because then we knew how we were going to attack this." David Hill, a pediatrician said, "A lot of people find that when their child is diagnosed with Rett, suddenly a mystery is solved because these children start seeming to develop normally up to about six months of age. Then quite suddenly they tend to lose their communication ability, the ability to use their hands or even control their bodies." There is no cure or treatment for Rett syndrome. Until there is, these families say they are dedicated to giving their children the most normal life possible and spreading awareness for the disorder. The families are all Rett syndrome advocates who are spearheading tomorrow's Strollathon. WWAY is a co-sponsor of the event at Wrightsville Beach Park. You can come out and support Rett syndrome research with donations and a mile stroll. For more information, about the event, visit our earlier story detailing events happening around Wilmington this weekend.

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there is help

Please contact ECAC (Excetional Children's Assistance Center). they have a great program that is 8 weeks once a month meeting in Raleigh .It is called Partners in Policymaking that is a group of people that are parents, adults with special needs, teacher, doc, etc. and we all come together to help and learn. They will put you in touch with your state and local officals, teach you how to work with the schools, local community. Call 800-962-6817. or website