Keep Connie moving!

Connie Preston is your normal loud, happy, excitable, chatty five-year-old. She loves to run and jump and play with friends. She loves to cheat at board games. She is pony mad, doll mad and is obsessed with Mater from Cars. She has a strong mind and refuses to have her hair cut. Her hissy fits are so legendary she has earned the nickname Chucky. She is beautiful, bright and funny.

But on the other side Connie is  different; she has a rare, incurable, degenerative neurological disease called Hereditary Spastic Paraplegia (HSP). The disease causes spasticity of the limbs from the hips down, progressing to eventual paralysis. The type Connie has, normally displays in adulthood, to have symptoms as a child makes it even rarer and harder to predict its progression.

At present Connie has spasticity of the lower limbs, clonus of the ankles and frequently falls. Long days out and too much time walking/running makes her tired and her legs ache. She has already overcome speech delay caused by HSP (although is still under speech therapy) and has issues with her general fine motor skills. 

There is no known cure at present, but physio and exersize can help slow progression. Having been urged by friends and family who want to help, this funding page has been set up to help pay for Connie to see a neurological physio and receive regular physio and hydrotherapy sessions to increase her chances of staying mobile for longer.

For this happy go lucky five-year-old it really can make the difference when it comes to keeping her out of a wheelchair for years to come.

Any funds raised over this total will be donated to HSP Group. Find out more about the work they do at: http://hspgroup.org/
  • Katie Shaughnessy 
    • £20 
    • 74 mos
  • Neill Clark 
    • £26 
    • 74 mos
  • Matthew Gillham 
    • £25 
    • 74 mos
  • Yvonne hibberd 
    • £10 
    • 74 mos
  • Quentin Casey 
    • £30 
    • 74 mos
See all

Organizer

Jenni Preston 
Organizer
Hornchurch, Greater London, United Kingdom
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