Help Georgie by getting specialist equipment.

Hi, my name is Georgie and I am 2 and a half years old.

When I was born, I was healthy and developing like any other little girl.

However, in my early months of life, my gross motor skills started to regress and were no longer developing as they should do.

I developed a tremor in my hands, I was not able to weight bear, roll over or even sit unaided.

After a long battle with health care professionals, I have been diagnosed with Spinal Muscular Atrophy, Type 2.

In Spinal Muscular Atrophy (SMA), there is a loss of important cells in the spinal cord called motor neurons, and therefore my muscles are not able to develop in the same way as a normal child of my age would.

I am currently lucky enough to be receiving treatment for my condition. The treatment consists of an injection into my spine, every 4 months.

As long as my condition does not deteriorate or my spine does not develop Scoliosis (an unnatural curvature), I will be able to continue to have the injection for life. If I had been born a little earlier I could have received it for a longer time.

The treatment of spinal muscular atrophy type 2 (SMA2) includes an injection of Spinraza into the fluid-filled space of my spinal canal.

Continued treatment with Spinraza has been reported to dramatically slow progression of the disease and has in some cases improved symptoms already present. However, not all children with SMA2 respond to treatment with Spinraza. and some medical complications may prevent the use of the treatment.

Over time I will need supportive treatment including physical therapy, occupational therapy and assistive devices such as braces, walkers and wheelchairs, etc to maximize my mobility and independence. This may help to prevent or delay scoliosis.

Unfortunately, there is some equipment that is not available on the NHS until I am 5 years old.

I would like a wheelchair and other equipment to help keep my spine straight enough for me to continue to receive my treatment.

Wheelchairs are very expensive.

My family have very kindly agreed to do marathons, 10k runs and a sky dive, (hopefully next year), to help try and generate enough funds for me to be able to get the wheelchair, and any other equipment that could make my life so much better.

I do hope that you can help me in any way possible, and if you would like to share this to anyone that could help a loving, funny and delightful little girl, please do, (I won't say no).

You would make my heart swell with pride and as a thank you I will give you one of my wonderful smiles

Many thanks,

Georgie, aged 2 and a half.