Amy was my first baby and when I had my second child I could really see the difference in their development looking back. Although Amy appeared to be a normal baby, she didn’t advance to more complex play and then started going backwards.” – Jan Bell. a definite answer and I could focus on the therapy we needed to help her.” Sunshine Coast local Jan Bell, mother to 22-year-old Amy has a similar story to share. “Amy has a classic, textbook case of Retts,” says Jan. “But because she is older and less was known about it when she was born, and there was no Internet back then, it took a lot longer to get the diagnosis. “Amy was my first baby and when I had my second child I could really see the difference in their development looking back. Although Amy appeared to be a normal baby, she didn’t advance to more complex play and then started going backwards. “Our marriage actually broke up under the strain. My husband gave up, he couldn’t cope with the diagnosis, when he knew we couldn’t fix her, he got depressed and just couldn’t handle it.” Nineteen-year-old Kate Jenning’s mum Heather tells another heartbreaking story of her daughter’s diagnosis. “Kate was even more advanced than her sister as a baby, she met all her milestones, she was crawling at seven months running and climbing up stairs and then it all stopped. We too had an autism diagnosis at two and a half and did the early intervention program but were not seeing any results. It was Kate’s speech therapist who actually suggested she had Retts, despite our neurologist telling us otherwise. We had blood tests and it was confirmed. “It was devastating after six years that we had to come to the acceptance that she had Retts. I went into the foetal position for a while. “In a way though, the diagnosis took the pressure off us. We had to shift our goals. We didn’t do speech therapy any more, we just concentrated on working on her mobility.” My heart aches for these mums as they share their most intimate hopes, fears and dreams for their gorgeous girls with me. This circle of friends are a pillar of strength for each other. It is obvious the trio share a unique bond that only those who are going through the same challenges can truly understand. “I came from Phoenix Arizona with a population of three million and I didn’t know one other family with Rett Syndrome. Within days of arriving in Queensland in 2011, I was at a Rett Syndrome picnic in Nambour with 27 other families, all with children with Retts. We have such a great network in Queensland and I have formed such great friendships,” says Beth. Supporting these mothers and Rett Syndrome families is not for profit organisation Equity Works. Based in Nambour, the organisation won the tender to oversee an innovative new State-wide respite program Respite Plus, aimed at families in Queensland living with the devastating genetic condition. Queensland mum, Trish Donnelly, mother of Lilly Grace, who has Rett Syndrome, was instrumental in creating new approaches for supportive care and community building for children born with the condition. She and her husband are now building a home named after their daughter as the cornerstone of the new Respite Plus program. As I bid farewell to these beautiful mums and daughters I am both humbled and inspired by their tremendous strength and compassion. Their precious daughters are loved and cherished and these women are forging the way for a better understanding of the condition and are at the forefront of helping these girls live the fullest lives possible. For more information about Equity Works, go to www.equityworks.org june 2014
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