Specialist equipment and care to help Cleo

Hi, my name is Michaella.

 

I have 3 daughters.. Marlie who’s is 3, then Twins Cleo & Wynter who are 2.

 

In November 2020 I received the devastating news after months of vigorous blood tests, a  lumbar puncture,  seizures and failed MRI’s  that one of my twins Cleo had lissencephaly, also known as smooth brain. She was only 7 months old.

Because of this it also means she has epilepsy, infantile spasms, microcephaly, global development delay, suspected Dandy Walker Malformation (the bottom part of her brain is undeveloped), she is deemed unsafe to swallow so is permanently PEG fed and also has Cortical Visual impairment.

This diagnosis means we do not know if she will be able to do things most ‘normal’ babies and children can, such as sit up, crawl, walk or even ever be able to talk to us.

 

As you can imagine getting this diagnosis as a parent was one of the worst things I could ever possibly hear, it is terminal,  life limiting and only 1 - 100000 babies have it.

 

Cleo is now 19 months old and is the most incredible little baby and thrives everyday, I am in awe of her strength every single day and as I am her only voice I will do my all for her for the rest of our days to make sure she gets everything she possibly can to make her life that little easier!

 

Due to her condition she needs a lot of therapies and equipment at home and out and about in order to get on with ‘normal’ things, we very luckily get some equipment through our medical teams but we only get ‘necessities’ not necessarily what would be a bit of joy or comfort for Cleo.. so anything like that we have to get ourselves which of course comes at a large cost.

After our first year of getting her diagnosis we have had some other setbacks which unfortunately come along with her condition..she got diagnosed with spasticity 2 months ago which affects her muscles shortening and gives her spasms in this way aswell, basically like us getting cramp, which is not very nice! So she was started on another medication which helps with this but unfortunately it can make her very floppy so regular Phsyio is needed.,something I’m hoping this money will go towards, as being a mommy to the other 2 girls aswell I just don’t have the time to give her the stern Phsyio she needs.

The first main thing we need is a ‘stingray R82’ pram which is extremely modified and perfect for Cleo.

 

I have started this page and trying to do some fundraisers for her and any money we receive is going straight towards my baby girl in bettering her life in WHATEVER way it can. She didn’t choose for this life so why should she not live the best life if she can.

 Since starting this gofundme, we’ve had an amazing amount of generosity from people who have set up their own events to raise money for Cle.