Raising awareness of Caden’s mystery 18p11.32

The story of Casey

Hi I am Casey, Cadens very proud mum.
This story and journey out there in hopes for a diagnosis or cure.
Caden was born July 21st 2008.Started just a day before his 2nd birthday 2010 nothing prier. He is now 5 years old and is still having these “attacks”.

He has several major things that we know of what we have identified:

1st when he gets viral, colds they attack him so viciously and continuously fast his body only get a break when his been ventilated or a massive clusters of seizures.

2nd acute seizures which have up to 8 week cycle to the next seizure.

3rd grand mal seizures blood and MRI always came back good.

4th have found him not breathing performed CPR

5th He also developed blood clots in both legs from main vein IV.while being ventilated was on clexanne for 6 months all up through a butterfly.

6th his heart rate has times its become erratic jumping normal 110 to 60 then to 130 as an example unknown is medically induced

7th food allergies lime strawberries capsicum and coconut

8TH broncho spasms resulting in an acute narrowing and obstruction of the respiratory airway

9th cardiac and respiratory arrests unknown

10th acute brittle respitry

He has had every test, scan done possible so far and nothing has come back. None of his doctors know why all this has happened and why so sudden .
We have no idea what the future holds for Caden.

been admitted countless times to swan hill hospital, Geelong hospital, Royal Children’s Hospital and Monash medical center, 9 ventilation’s 10 special care stays and 50+ at least admissions for monitoring. Every time he gets ventilated his fine for 1-2 months then starts the vicious circle again,.He gets some developmental delay when his been ventilated he needs to learn to walk, eat and talk again.

Cadens has also been on about 10+ different medications currently on seratide tryed lorettadean, singlulair, flixitide junior, flixitide, alvesco and another i can’t remember the name of some and we have had some shipped over from u.s like theonophilon and so far none of them have worked. Life with Caden has been very hard and the not knowing is the hardest thing ever. It’s very time consuming and checking on him atleast every 2 hrs, hospitals long times away from family and friends can get isolating. Simplest takes are even tricky needing plans

With all the equipment side of things: WHAT WE HAVE ACHIEVED

ipad for cadens long stays in hospital, it does get hard for him when his hooked up to a drip etc

we have lucky swan hill north donated a
a mat that goes under cadens mattress and has a monitor we can set for oxygen and heart rate

we have bought mini finger stat that’s the size of your thumb so we can bring it where ever we go

pirate theme bedroom
castle/cubby house kids wonderland

Holiday not sure where 🙂

Commonwealth bank. Casey Warne
BSB 06 3523 ACC # 1049 8499
Reference Helping Caden.