Kaytee is mum to Jaxon; a bubbly, beautiful, happy little boy who also happens to have been diagnosed with congenital cytomegalovirus, a rare chromosome deletion, Barrters syndrome and severe hypertrophic obstructive cardiomyopathy.
Kaytee is a mum who loves her son dearly, like the rest of us. But she is also human, like the rest of us. And as documented over social media, Kaytee has found little support through the minimal care provided for her high dependency child and even this is now likely to be removed altogether; she’s fighting to be eligible for the most basic of care plans. Quite simply, she’ll be left doing more than she’s already doing, while running on empty and the opportunity to actually enjoy her time as a parent will cease to exist.
Jaxon, unlike lots of children, doesn’t go to sleep of an evening and stay that way ‘til the following morning. His mum is responsible for round the clock care and this includes throughout the night. The list of ‘jobs’ and checks she has to undertake just to make sure he’s safe is astronomical and no human alive can be expected to carry them out, each day, with no respite. In just one night’s sleep alone, Jaxon needs changing 8-10 times and that’s without changing bedding, flushing tubes, providing medication.
Myself and Rosie, don’t know Kaytee personally, nor do a large percentage of her followers. But I think we can all agree we’ve all watched her story unfold, the barriers she’s facing and want to help. Kaytee has already fundraised for Jaxon herself when he needed specialist equipment to help his posture and this is still active. However, we wanted to remove any further pressure and set up a page ourselves to help fund private care should the current, NHS provided service be removed from their lives. Should their assessment be successful, allowing NHS care to stay in place then Kaytee can either use the funds raised to provide herself and Jaxon with additional care, pay for other much needed equipment or get herself a bloody takeaway/holiday.
This is a woman at breaking point and a boy who’s whole world needs to be functioning on all cylinders for him to thrive. Let’s help as much as we can. And thank you so much in advance, any donation is genuinely so very much appreciated. We know this is a wider problem and that NHS resources are stretched but we’realso in a position to help a friend who’s struggling.
Thank you again.