making muscle wasting history

Upcoming Events [0]

sarahlou has no upcoming events.

About sarahlou

Interests

People fascinate me. Politics, religion, physical and mental health, culture and the influences these have on communities, relationships and individuals!

About me

Im Sarah, i live in Nottingham with my partner Jay and our two children, Aston who was 4 in December 09 and Ava-Rose who was 1 in January 10.
I work for a voluntary organisation supporting children who have experienced domestic abuse and working with parents to understand the effects this can have on their children.
In May 09 our son was diagnosed with Duchenne Muscular Dystrophy. We now know that is a 'spontaneous mutation' and has a deletion on his dystrohpy making x-gene for exon 3-17. There is no family history of Duchenne and he is the product of a new mutation.
Jay and i are dealing with this diagnosis in the only way that we know really, which is by reading everything we see, speaking to everyone we meet, asking lots of questions and being positive and pro-active whilst raising awareness and hopefully lots of needed money!

Aston

Aston is a lovely, calm, kind little boy who has lots of friends. He runs away in the face of confrontation and is the first to say 'be careful' in any of those usual, daily parenting situations. He has an amazing memory and often drops random facts into general conversation or will ask if you remember something that happened when he was 2 years old! He is doing really well at school and the school are very supportive of him.
He loves superman and buzz light-year and has something of an obsession about flying, the ability to fly and anything, real or imaginary that can fly!
The duchenne means he can no longer get up steps, hop, jump, get up from the floor, put on his own shoes or walk very far without becoming tired, in pain or upset. He also struggles to sit himself up in bed.
Aston knows he has 'poorly muscles' and will explain to anyone that asks.
He loves swimming and being outside and enjoys the simple things in life such as building tents made from string and bed sheets and listening to stones splash into water.

Previous Events [1]

• Nottingham Robin Hood Marathon/ half marathon and fun-run - 13 September 2009

  There were a large group of us, 64 people in total including children from 2 years old, right up...

Your Shout [0]

sarahlou has no articles.