Our daughter Allegra was born six years ago, the happiest baby, smiling, laughing and engaging with sparkling eyes. When she was about 18 months old, she changed. By then, she should have been speaking but wasn’t. Doctors at first attributed it to glue ear, as she had endless ear infections. However, gradually, she seemed less and less engaged with the world. We trawled from hospital to hospital for endless assessments. One team of specialists diagnosed sensory processing disorder, another decided she had autism. I drove myself and everyone else mad trying to figure out what was wrong. She had changed from the baby we knew, but why? Three neurologists dismissed me as being in denial that my child had autism. Then we saw a wonderful nutritionist, Lucinda Miller, who recommended we consult a neurologists and after an EEG we discovered that Allegra had epilepsy.
She had been having multiple but undetectable seizures every day in the area that controls speech and language. The autism was, what we now know to be, a common misdiagnosis. A genetic test was ordered to see if this was a specific type of epilepsy and if so whether there was a medication that would cause her to “wake up.”
We were hopeful.
A week later we went read the test result: Rett Syndrome.
As we learnt more about this disorder, the pieces suddenly fit. Why she had developed normally for 18 months, why she presented autistic traits, why she has epilepsy, ADHD and so on. The diagnosis was both a relief that our search for answers had ended, but a crushing pain as the realisation of what the Syndrome entails became clear.
Before the diagnosis I used to worry for Allegra’s future. Now I worry if she will have one at all.
My husband Alex researched and wrote to or met everyone he could find in this field, including the indefatigable Monica Coenraads. I thank God every day for Monica. She explained everything, identified Allegra’s particular variant of Rett and told us what she and RSRT were doing to find a cure.
Monica and RSRT picked us up off the floor and have given us hope.
Allegra is a beautiful, strong willed and funny little girl who loves to run and play and swim. She loves music, animals and being with her family.
We are doing our best to give her the life that she deserves. While we cannot do anything medically, we support RSRT, other charities and members of the community in their efforts to alleviate the suffering of thousands of girls around the world.
Your support will help. Together we can work to find the cure for this cruel disease.
Thank you for reading our page, for helping Allegra and all the other children afflicted with Rett.
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