Ann-Marie and Lee are parents to Nisha and Kayla.
There was little sign at the beginning of Kayla’s life that she was ill. In her first year she missed a few milestones but Kayla was a happy, babbling baby. After expressing concerns more than once about Kayla’s delayed mobility Ann-Marie finally got a referral. Kayla was diagnosed with Hypotonia, which accounted for some of her symptoms. Further tests took place by geneticists and neurologists and at two and a half years old it was confirmed that Kayla has an uncommon form of Rett Syndrome (RS).
“There’s little information about Kayla’s RS,” Anne-Marie said. “It affects children differently but we understood that while we didn’t have a definite prognosis, Kayla could suffer from developmental regression and it could limit her life expectancy.”
Kayla requires 24/7 care. She uses a wheelchair and receives her medicine, liquids and extra calories through a PEG tube which goes directly to her stomach.
As Kayla has grows, so does the physical effort required to ensure that she stays comfortable. Her parents explain that the family home needs to be developed – with plans for a downstairs bedroom and wet room and wider doorways to accommodate her larger wheelchair. Both Anne-Marie and Lee now have bad backs from lifting Kayla up and downstairs. Older sister Nisha helps out hugely by fetching things for Kayla and helps at mealtimes too.
“Because we’re sleep deprived and Nisha helps us too it makes the visits by Caroline, our Jessie May Nurse, so important.” The visits are used to devote quality time to Nisha, anything from a relaxing family meal to bowling or a trip to the park. Something that would usually be difficult to take Kayla to.
“When Caroline visits she will always bring Kayla’s favourite toy and make her giggle.
“Before Jessie May, Nisha had never considered doing anything without Kayla. Nisha is brilliant with her and helps out in so many ways. She deserves to have fun and time with her mum and dad as any other child gets. Jessie May allows us to give that to her and that, to us, is invaluable.”