Ellie is a 7 1/2 year old little girl from Kirkby Malzeard near Ripon who was diagnosed in December 2011 with Spinal Muscular (SMA) type 2.

SMA is a genetic neuromuscular disease, which means it is inherited and effects nerves responsible for muscle function. Children with SMA face the prospect of progressive muscle wasting, loss of mobility and motor function.

Progressive wasting(atrophy) of muscles can lead to the following:

Atrophy in trunk muscles can lead to skeletal deformities (e.g. scoliosis) Atrophy in breathing muscles can lead to potentially fatal respiratory problems Atrophy in swallowing muscles can lead to difficulties in eating and drinking

She will need care her whole life so our aim is to help her be as independent as she can.

Having recently finished adaptations on our house our next focus will be

To get our van adapted so Ellie can drive into it

A portable hoist to help with lifting and lowering around the house and when we are out and about.

As she gets older we will be looking for automated entry and exit systems for the house

Her current power chair will need replacing in the next couple of years as she grows