Help Baby Grace Ava Williams who was born 23.11.12 and has the life limiting condition 'Edwards Syndrome'. Please help support Baby Grace.
Berkshire, UK
Joined December 2012
- Tweets57
- Following5
- Followers217
- Likes0
@MarishPrimary Thank you so much for all the money you raised from the sponsored walk for Baby Grace. #EdwardsSyndrome #Trisomy18
Great Ormond Street have said no to operating on Grace! Please help her find another way to get op. #EdwardsSyndrome
Please join Baby Grace on Facebook to show support facebook.com/HelpBabyGrace?r… #Trisomy18 #EdwardsSyndrome
@bmwalker89 Thanks again. You can also follow Grace on Facebook if you aren't already facebook.com/HelpBabyGrace?r…
@bmwalker89 Thank you so much, please see paypal link is below;
paypal.com/cgi-bin/webscr?cm…
If anyone missed Laura on the radio last week you can listen to the recording here:
bbc.co.uk/programmes/p015h9l… #Trisomy18 #EdwardsSyndrome
Sponsored Walk to raise money for Baby Grace, from Langley Village Park to Windsor on Sunday, 31 March at 12:00, £10/person. Please join us
Today is National Trisomy 18 Awareness Day. It occurs on the 18 day (18 chromosome) of the 3 month (3 copies of the chromosome) of the year.
Secretary of State has told us that nobody can be denied an op unless they have clinical justification, which they don't. #EdwardsSyndrome
They've arranged an ethics mtg about Grace next week.They're saying its not worth operating as she'lll "be disabled anyway" #EdwardsSyndrome
Does anyone know a child with EdwardsSyndrome?Pls contact us. Are there any known Edwards babies who survived heart op?Did it prolong life?
Laura has found published literature from US that stated cardiac intervention prolongs their lives #EdwardsSyndrome #Trisomy18
After mtg with a cardiologist from Great Ormond St they won't operate on Graces heart as the "text book" says not to operate on T18 babies!
Unfortunately the blood flow through Grace's lungs has increased so she has begun new medication, accompanied with a short stay in hospital.
Grace posing for the camera on her first photoshoot, with the very talented @lauzphotography #edwardssyndrome
