Help fund Matthew's support worker (NDIS won't)

My name is Matthew, I am 18 months old.

I had a rough start; I spent the first 6 months of my life in hospital. I was born with a condition called Jacobsen Syndrome. Few people know about it, including doctors, because it is very rare. It means I am missing a big piece of my 11q chromosome and that means things didn’t form properly when I was in mummy’s belly.

Because of Jacobsen Syndrome by body didn’t grow half of my heart – so I was born with only half. I’ve had 2 open heart surgeries and 3 other heart procedures to make sure I can survive. I even had a cardiac arrest and made it through!

Jacobsen’s also means my immune system doesn’t work properly. The vaccines are not working how they should, so while mummy and daddy vaccinate me to try and make sure I don’t get a nasty bug, they are not doing anything to protect me.

I still don’t know what else Jacobsen’s Syndrome will mean for me, but I know it means I am different. I am way behind the other kids my age. I don’t know how to crawl, talk, stand, walk, drink or eat. Other kids my age are moving around, but I haven’t worked out how to do that yet. I’m also super little, I am still in size 0 clothes.

I have issues with my sight, and there is something in my brain that they want to investigate more. I am always constipated, another normal part of Jacobsen’s and so mummy and daddy need to help me a lot to do a poo! I have a blood disorder where I lose my platelets and can have problems with bleeding.

I also had pyloric stenosis, which meant my stomach was closed to my intestines and I needed surgery to fix that.

My oxygen levels are low, so I don’t have much in reserve. For most people your oxygen would be 100%, mine is 70%, which means when I get sick I get very sick very quickly and need a lot of help.

I don’t know how to swallow much, so I have a tube in my nose that goes all the way to my belly for food. I vomit a lot and get bad reflux that makes me cry because the tube means my stomach is forced to stay open with the tube. I am allergic to dairy and soy and need a specialised formula to make sure I’m getting enough calories.

I can’t sleep very well, and I get very sad at night. Mummy tells me a lot of kids with Jacobsen also have problems sleeping, but also my reflux always makes me sad and keeps me awake.

No one knows how things will go in my life, but I have so many specialists and therapists to help me have the best chance.

I also had a support worker. My support worker was my favourite part of my day. She would help me with things while mum and dad were looking after my brother and doing normal mum and dad things like cleaning the house, washing, cooking, and working. My support worker would help me with my exercises to help make sure I can one day walk, and she would help with my tube feeds and help teach me to swallow by following the tasks of my speech pathologist. My support worker has changed my life and helped me so so much – I can sit up now and reach and play with some toys because she spent so much time helping me learn. But the NDIS just took her away from me.

Mummy and Daddy still must work, clean, cook, wash, look after my brother and do all the other mum and dad things, but now I don’t have the help that I did. Mum and Dad try, but with so many other things to do, like all mummy's and daddy's there isn’t countless free hours every day to make sure I can get the practice and care I need above all the normal parent things. The NDIS told my mummy they don’t pay for ‘babysitting’ and that made my mummy really sad, I need nurse care and help, but for them to say I only need a babysitter shows they don’t understand anything about me.

I had an NDIS plan of $75,000 and that was cut to just $29,000 and includes no at-home help at all. I need so much help and mummy and daddy are just at absolute capacity and can't help me any more than they already are. The NDIS has changed my life in an instant, for the worse, and they don’t even release what they have done to my quality of life and my chance to develop as much as possible before 5.

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The NDIS was created to look after those with severe and lifelong disabilities. That is what Matthew has. His parents are two of the most generous people you will meet but they are so tired and have no fight left, and have just been let down by the organisation that was meant to help them. The organisation was funded for people like Matthew.

All funds raised will go to Matthew's parents with his mum, Angela Inglis, being the beneficiary of the account.