Milton keynes marathon for Eva's journey
Donation protected
HI everyone!
- my name is jonathan Watkins from Porthcawl South wales and on the 21/09/2019 my brave beautiful granddaughter was born with a rare neurological disorder called moebious syndrome. it affects the cranial nerves that control facial expression and eye movement. meaning that people with moebius syndrome are unable smile, frown, raise their eyebrows, grimace, move their eyes laterally or blink. It is estimated that moebius syndrome affects 2 to 20 per 1 million people
Some of the symptoms may include:
- lack of facial expression
- inability to smile or frown
- feeding. swallowing, or choking issues
- absence of lateral eye movement
- limited movement of the tongue
- dental problems
- absence of blinking
- strabismus(crossed eyes)
- drooling
- submucous cleft palate
- development and learning difficulties
People with facial differences are often avoided, stared at, feared, or bullied
The #1 request from the moebius syndrome community is for a greater public understanding
watching eva in her early years overcoming so many obstacles has inspired me so much!
so not only do i want to give something back by raising awareness.
I would also like to raise funds to help eva in her learning, development, travel costs to alder hey hospital, and a safe comfortable enviroment for her to stay.
So on sun the 5th of may 2024 ive registered for the milton keynes rocket 5km
And 0n monday the 6th of may 2024 ive registered for the milton keynes marathon.
in the hope of helping eva on her journey
any help and support would truley mean the world to us all!
many thanks xx
Organizer and beneficiary
Jonathan Watkins
Organizer
Wales
Craig Hadley
Beneficiary