The Life and Soul of a Mole

1. Intro 

2. Coming into the world

3. Lesch Nyhan Syndrome diagnosis

4. Where I have been

5. SEN School - my experience

6. Living with Lesch Nyhan

7. Mole care / PA services 

1. Intro

Hi guys, my name is Mole and I am a fun loving, outgoing guy who has LNS.

But what is LNS?

LNS is short for, Lesch-Nyham Syndrome, which is a genetic condition and means I am missing an enzyme.

I am fully compos mentos and I have a good zest for life - – I say this because often people see the wheelchair and think that I am. 

In fact I am far from it! 

I may be in a wheelchair, but I am not stupid.

2. Coming into the world

I was due to arrive in the week beginning 16th June. Mum went for a scan on that date to discover I was upside down! Dad was mortified as this meant he’d been talking to my bottom thinking it was my head! 

So on 18th June at 7.30 am mum went into the then brand new Princess Royal Hospital in Hayward Heath for me to be the first baby to be delivered by C section in the operating theatre. 

As with so many aspects of my 33 years (to date) mum tells me I had to be different – Mum had chosen not to have a general anaesthetic for the operation , but, I was well & truly stuck so she still had to have a GA while they got me out. Having taken so long to extract me, I was a bit slow to get going, so the nurses wrapped me up & stuck a white woolly knitted beanie on my head!  

Daddy had to take me up to the special baby care unit to get warmed up – on the journey he talked to me about the views (including cows). After a short stop in the ‘incubator’ I got to meet my mum – she & I stayed in hospital for seven days.

3. Lesch Nyhan Syndrome diagnosis

I was 18 months old when I got my diagnosis and it changed my life forever. 

I don’t like talking about LNS, it makes me upset, but it’s got to be done to help others and raise awareness. 

4. Where I have been

I am nearly 34 years old and I am a trouble maker! 

I love cars and women, and anything with an engine. I am lucky enough to visit my favourite places, such as Goodwood and Brands Hatch regularly. My favourite races are the trucks, the bigger the better! 

If it’s not the roaring V8 engines I’m listening to, it’s my music. I am a massive fan of Drum and Bass, you’ll hear me before you see me driving past you. 

For many years I have had the privilege of attending a lot of music events such as Captial FM Summertime Ball. When I got to see Calvin Harris live, I was in my element and it was made even better when I got to meet Dizzie Rascal, he shock my hand, which was cool! 

I love my food! My choice of takeaway will be a massive Chinese, or a gigantic pizza, or curry, or kabab… you get the idea. 

My ideal day would be sitting on the sea front, with a drink and spending quality time with my two PA’s. 

5. SEN School - as a child 

I set off the fire alarm on the last day and set sail into the sunset.

I didn’t like them because I felt it was too institutionalised. I didn’t get to do what I wanted, when I wanted and as a result, I became rebellious.

I didn’t like that I wasn’t allowed to play my music, so on the last day, I blasted it as a loud as I could.

It was very strict in its structure and I didn’t get the sense of freedom and independence that I get now. Living on my own with 24/7 care has enabled me to be independent and free with my own choices.

6. Living with Lesch

I have Lesch-Nyhan syndrome, it is an extremely rare metabolic disorder that occurs before birth, mostly in boys.  

I am a full time wheelchair user and I have to wear protective equipment every day.  

It causes brain and behavior problems, including severe arthritis, poor muscle control and mental disability. A key symptom is uncontrollable self-injury. 

I am writing this blog to raise awareness and spread a positive message to other young adults with complex needs, who are  living with similar challenges to me. 

The worst bit about my disability, is I can’t control my anger and frustration. It’s like living with the devil and an angel on each shoulder who constantly fight for control. 

7. Mole care / PA Services 

In 2018 my mum and dad setup Mole Care as a private company, employing a team of Pas/ carers on my behalf.  

Managing such a team can be complicated and  time consuming. My parents wanted someone to overlook my care now and into the future and this is when PA Services came into my life. 

I now have a team of 14 Pas that provide care and support to me round the clock, they are ace! 

PA Services have even given me the title, ‘client ambassador’ which I’ve taken on and feel very proud of. I love it! It brought me into a whole new world. 

Since being ambassador, I have been given various responsibilities, such as running a disco every month for clients internal and external, to get more people aware of the service. Nobody has ever trusted me with such responsibility before.  

I would like to commend Lucy Walker, Director of PA Services For You- and my friend for entrusting the role of client ambassador to me. 

With this blog, I hope it will create awareness of PA Services and what they have given me in terms of independence and freedom and to create awareness for others who share my challenges.

You are not alone. 

Mr G E Martin 

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