I have a website and a few social media accounts. I have a you tube channel.
Compared to many, my website and social media accounts are tiny.
But, for a five year old non-verbal boy, I'm making a lot of noise.
We're like many other parents who have watched their child suffer.
We chose not to sit back quietly. We chose to scream about it.
Over the years, we have become bolder and braver, baring more and more of our heart and soul. We maintain the cheeky nature, because it's exactly what I'm like, but we're more honest now, too.
And, maybe because of that honesty, people are happy to help when we do fundraisers. For us, raising money for charity is a way of giving back... Returning the support we have been shown.
For us, it is also a way to show cerebral palsy, my vision impairment and my hepatoblastoma that we are not going to sit back and let those things blacken our days! We will fight back!
And, the more we talk about it, the more awareness we raise.
So there, cerebral palsy!
Take that, hepatoblastoma!
At the time, those months dragged and dragged. We never thought we would get home. Now, we almost never talk about my NICU days.
(We remember my nurses, though!)
When I left the hospital, we wanted to do something to give back a little.
Mum and Dad left a huge jar of lollies for the nurses at both hospitals.
We also arranged for some humidicrib blankets to be made.
Because the lights in the NICU are always on, sometimes it's difficult for the babies to sleep. Its too bright. Blankets can be placed over the humidicribs, to darken the space for the babies. The blankets also brighten the room and reduce the sterile hospital look. The blankets also 'wrap' the babies in love and comfort.
My Nanoo and her sewing group made a whole pile of humidicrib blankets, to be placed on the cribs of other tiny babies. Here they are:
We decided to take part in the local Relay for Life weekends.
It was a way for us to raise money for research; to help find ways to improve treatments and improve the chances of people beating cancer.
It was also very therapeutic for us. It was a way for us to gain some strength and show cancer we would not give up easily.
We shared our fundraising links and over the last three years, generous supporters helped us raise $20,967 for the NSW Cancer Council.
We relayed in wind and rain, in freezing cold and in warm sunshine. My family and I walked the Survivors and Carers lap, each year. Mum gave a ten minute speech, all about me and how difficult things had been.
We asked people to join me, and add their name to a section of the truck, near mine. So many people joined in! So many people gave a lot of support. We had names from all over Australia, as well as some names from overseas!
Over two years, with our generous supporters, we raised $11,595 for Camp Quality.
It was cool seeing so many names near mine, on the trucks.
My sisters love their Giggle shirts!
We are doing the Mothers Day Classic. We are doing the 6km walk. We want to get fit and healthy. We want to feel strong. One day, I want to go in a cool race, like a triathlon or an obstacle course race. To do that, my family need to get strong.
The Mother's Day Classic will be our first 'fun run' event, even though we are just walking. (We will walk fast!) You can sponsor us, if you like! Click here.
The money from this goes to supporting research into better treating patients after they have been treated with breast cancer. Donations over $2 are tax deductible.
***This is an old photo***
So far, the Love Dexter team has raised ~$33,600 for charity.
We would like to return the donations and support that have been made to me, so we still have a long way to go, but we are proud of what we have achieved so far.
Supporting others does make you feel better.
Knowing about the difficulties others face, and doing something to help them... that can make you smile. And, you get to make great friends along the way!
I'm sure we will be involved in a lot more fundraising events in the future!
#turningfive #birthdaycountdown