Ruby has a rare neurological condition called Alternating Hemiplegia of Childhood (AHC) this is a life-limiting/ threatening condition which can be helped with gene therapy.
Being the truly unique girl that she is, this condition is so rare that it affects only one in a million people worldwide.
Ruby has suffered with life threatening seizures since she was 5 days old which can only be broken with rescue medication. This often leads to her going into respiratory arrest.
Ruby also has painful dystonia & muscle spasms, hemiplegia (sudden paralysis of limbs or full body) she has a global delay and is non verbal, suddenly stops breathing, she is also at risk from brain atrophy and sudden death.
Life threatening seizures are often triggered by over stimulation, a change of routine, water, noise, illness and even the weather. Because of this Ruby is only able to attend school part time.
Our biggest wish is for Ruby to have this ground breaking treatment, to live a more inclusive life style, enjoy things that kids do without having life threatening episodes and elongate her life!
This therapy could mean Ruby attends school full time.
This therapy could mean Ruby can belly laugh uncontrollably without the risk of it triggering a seizure.
This therapy could mean the difference between her reaching adulthood or not.
WHAT YOU COULD DO TO HELP?
Please DONATE to our fund however big or small, amazing things can be achieved when people come together..
Please SHARE her story, with a condition as rare as this, AHC is hugely unknown even by medical professionals. Which is why more awareness of AHC is needed..
Please FOLLOW our girls story on Facebook: Ruby, me & AHC to keep upto date with Ruby & our fundraising plans.
Thank you so much for your support xxx
Moggerhanger, East of England, United Kingdom