Quality of life is best

Leanne Kennedy is organizing this fundraiser.

Donation protected

Meet our amazing son Kai!

Kai’s journey has been a bumpy one, from what we knew Kai was born July 2019 a healthy baby boy we was over the moon especially after a 2 1/2 year IVF journey to get our already miracle boy in our eyes. At 2 weeks old the screaming started both day and night, this continued right up until Kai reach about 7months old. We visited the hospital a number of times in that period saying that something was wrong but we wasn’t listened to. We eventually managed to get Kai scans to investigate at 5 1/2 months old.... 5 days before Kai’s 1st Christmas we received the results.

Kai was diagnosed with serve multicysticencephalomalacia (serve brain damage &the brain that was there had now turned to cysts). Kai has been left with not even a quarter of his brain left un damaged. We got told that Kai will be Severely disabled and left with complex needs throughout his life. As you can imagine we was in utter shock, for months we was told that there was nothing wrong, that it was colic, reflux or a milk allergy to something so life changing.

Literally over night we was introduced to this whole new world we knew nothing about. Then January came and with that a lengthy spell in hospital, changes were coming thick and fast. So was new diagnoses: epilepsy (can have over a 100 seizures a day) full body cerebral palsy, microcephaly, dystonia and a unsafe swallow the list goes on. Kai stopped feeding, with that he needed surgery to have a peg fitted directly into his small intestine. Kai is under palliative care, which that in its self is mind blowing.

The last few months everything has been a fight to gain the support and equipment we need to provide a better quality of life for Kai. Equipment prices are through the roof something like a Ppod (suitable seating) cost over £1000, basic things like adaptive clothing cost more than your average clothing and for a good quality wheelchair from £7000. The older Kai gets the bigger the equipment.

We would like to raise enough money to not to have to worry and stress about how or when we can get something that Kai needs and instead enjoy the time we have with Kai making memories & investing time into his development giving him the best opportunities, instead of spending o
ur time form filling and on the phone being past pillar to post.

Kai is a cheeky chappy with such an amazing little character. He shocks us every day with what he can do with such little brain. He truly is our miracle baby boy and we just want to give him the life he deserves.Any donations will be spent on equipment making a difference to Kai’s quality of life in anyway shape of form.

Also if anyone that is reading this has a child with the same diagnosis please reach out to us, we know that Kai’s condition is rare and as of yet we haven’t been able to find another family with the same main diagnosis.