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Alex and Delilah's Story

“Delilah is a loving and happy almost 5-year-old with Rett syndrome.

At age 2 Delilah stopped talking almost overnight, shortly after she began to experience prolonged screaming episodes where she would be inconsolable. She then began to have times when she would stare blankly. After hearing tests she was seen by a neurologist who believed she was experiencing absent seizures and was concerned with her language regression. He believed she had a genetic condition and testing was arranged straight away. 

After 8 weeks we met with a genetic consultant who said all of Delilah’s initial genetic tests had not shown any mutations. However, from meeting Delilah she was confident she knew what condition she had and ordered the specific test.

That day was the first time I had heard of Rett Syndrome. I was told to go home and read about it. As soon as I did I knew that this would be what Delilah had. 

Over the next year Delilah began to lose weight, experienced drop seizures and convulsions and became more unsteady on her legs. It took 10 months for the results of the tests to come back and when they did it confirmed she had a gene mutation and Rett Syndrome. 

Delilah was diagnosed in April 2022, she was 3 years old at the time of her diagnosis.

Since then she has had PEG (feeding tube) surgery and is now almost NIL by mouth due to recurrent chest infections. She is due to have surgery on her eyes and requires adapted seating and a wheelchair to slow the curve of her spine. They believe that her epilepsy is uncontrollable because despite medication she is still experiencing daily seizures which are worsening, and Delilah is now unable to communicate now.

Getting everything in place for Delilah has been incredibly difficult, over the past 2 years Little Miracles have helped get Delilah her wheelchair and have given us a huge amount of emotional support. She attends a SEN school that she loves and where she is thriving and regularly visits the Little Miracles’ Sensory Room in Queensgate, a place where we feel comfortable and safe with our children.

Despite everything Delilah is very happy.”