Steph’s life goals!

I am Steph’s support worker and have been supporting Steph in setting up this page. Because of her condition, Steph hasn’t been able to write everything herself so I have typed what Steph wanted to share with you all. Thank you for taking the time to read this and for your support to Steph in achieving her final dreams.

Kia Ora, Hi, Bonjour,

I am Stephanie but I prefer to be called Steph. I have a rare genetic disorder which restricts the way I can move, lay down and sit up. It’s called Maroteaux Lamy Syndrome or Mucopolysaccharidosis Type VI (what a mouthful) (MPS VI), it’s normally recognised as a child’s disease. When children are born they have quite a sever level of the disease already in their system, it can progress fast or slow.

Living with MPS VI for me means being in bed, watching TV, having personal care done by strangers, not being able to be financially dependent, having intense chronic pain every day. I am lucky enough to have a cat who happens to be clever and open doors by himself, but I unfortunately don’t have many friends as I cannot go out in the community without a support worker and/or a taxi taking me. My disability cost me a lot of money to go anywhere as I have a big electrical wheelchair that most public transport do not provide access to.

In 2015, I got very ill from pneumonia which is one of the two ways I could die (the other one being a heart attack). On the 2nd of October 2015, I became so sick that they had my mum my Godmother and all the workers who worked with me to come and say bye to me as the doctor thought I wasn’t going to make the next 24 hours. I decided I wasn’t given in to MPS because I wanted to turn 50 years old, I was 49 at the time. (that was so I could brag and say, “10 years over my used by date”)

I had allowed myself to let the disease progress faster than it should off. I am now 51, I gave in to the idea I was going to die, and it can be anytime soon.

Being so close to death in 2015, I realised I needed to push hard to achieve three last goals (bucket list):

1- Seeing Celine live in concert in Las Vegas

2- A trip on one of the mega boat around Canada East down to the Caribbean

3- Tandem sky dive (Skydiving)

I will set up a page where I will post photos of my bucket list achievement

Help me live my dreams please!

Steph