Alfie Foundation.

Hello,  my names Alfie and I was  born on the 18th November 2014, Mummy and Daddy looked very happy when I came into their world.

  But shortly after being in my new home, I became floppy, and sleepy and my little body stopped breathing. My mummy was crying and  I was rushed into this room with all these doctors and nurses looking over me. Turns out I had a seizure, but the big people kept saying they didn't know why.

It wasn't long before I had my second seizure and I don't think my mum enjoyed all the blue lights in the ambulance as much as I did.

Mummy was really upset as she thought she lost me for a second time, she didn't know then, how strong, and determined I am.

Well, after 6 months of living in and out of 3 different hospitals, some surgery,  causing lots of stress to my Mummy, Daddy and big sister, and a few more nee nor lights I was told what was wrong with me.
My body doesn't make calcium like yours and when my levels get low I have these seizures, i think it's mad cos Mummy always says I drink soooo much milk.

The big people call it Autosomal Dominant Hypocalcaemia caused by an extremely rare mutation in my calcium-sensing receptor gene.  I know, I don't really get it either.  Mummy says there's a handful of kids that have it in the whole country, and my mutation has only been seen in one other person, that makes me pretty special.

 We finally found a really big Doctor person who said I needed this pump, it's a little band I wear with a small insulin set inside,  the other end is injected in my leg.  I have to wear it all day and night to make sure my body is always making its own calcium. 

My Mummy and Daddy hate it when they have to inject me every 3 days, I don't like it either but I make sure I'm a big boy and it usually gets me a treat.
Karen my community nurse  also has to inject me so she can test my calcium levels twice a week. That's alot of needles for a 2 year old. 

So, the only problem is this pump is not waterproof and I love water, I love long baths, paddling in the sea , swimming pools and jumping in muddy puddles like Peppa Pig.

Mummy says if I get it wet, my pump breaks and I will have to go back into the Doctors big house, I stayed there all over Christmas and it really upset my family so I really can't go back.

So I was wondering if all you nice big people could help me get a waterproof pump, so I don't stress Mummy and Daddy out when I'm having fun with my friends in water. 

They do cost alot of money but I promise I will look after it and I know it will make Mummy and Daddy alot less stressed when they see me playing.

Daddy says we are also holding a charity night to make lots of big people aware of what I have. It's on at my local, The Woldingham Village Club on the 16th September. I would love to see you all there, my Daddy is pretty funny on the microphone so I know it will be lots of fun.

Lots of Love
Alfie ♡