Like any proud parents Juna and Jag were thrilled when their daughter Jenissa took her first steps and spoke her first words. But this joy was not to last.
Within a couple of years Jenissa lost her ability to walk and even to stand – and she also lost the power of speech, no longer able to say anything, not even Mum or Dad.
Jenissa, aged 10 has late-infantile Batten Disease, which is a terminal and rare, inherited disorder of the nervous system. Jenissa is not expected to live beyond her teenage years.
Her mum Juna said: “Her last word was “news”. Her dad always used to come home from work and ask if there was any news. It was the last thing she said. She forgot all of her words. She forgot how to say Mum.”
Jenissa has lost all of her motor functions. She is blind and physically and mentally incapacitated, wheelchair or bedridden, tube fed and in need of 24 hour care. Jenissa was referred to Demelza at the age of five but the family did not use the facilities for a year.
Juna said: “I was put off by the word hospice. I thought it would be a sad place. Then when we finally visited I couldn’t believe that we hadn’t done so sooner.
“Jenissa loves it at Demelza. One of her favourite things is using the hydrotherapy pool and it’s something we can do as a family with her younger brother Astin too. She wouldn’t be able to use a public pool, it would be too difficult and also too cold.”
Jenissa also enjoys being in Demelza’s sensory room which brings smiles to the faces of her parents who cherish every moment they are able to spend with their daughter.
Juna said: “Demelza really helps us as a family. I can leave Jenissa during the daytime and at night and I know that she is being well cared for. It gives me time to spend with my son and last year we were even able to have a holiday to Butlins. It was the first time I felt able to leave Jenissa. There has been art therapy for Astin too.
“Demelza makes our lives a little bit easier.”
The family live in Folkestone, Kent.
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