A new baby is always a great time for families, but when they are diagnosed with a very rare syndrome or condition it turns the lives of these families upside down. We’d like to support and raise the profile of Gary Copp (Goldseal Windows and Conservatories) Grandaughter Kaysey who has just been diagnosed with a very rare condition known as SMA (Spinal Muscular Atrophy).
SMA (Spinal Muscular Atrophy) is a rare neuromuscular disorder characterised by loss of motor neurons and progressing muscle wasting from miscommunicated signals from the motor neurons in the spinal cord, which affects the muscles used to walk, crawl, move our limbs, swallow and even breathe.
After the diagnosis of his beautiful grandaughter, Gary and his family have been researching and finding out all they can about this condition and how it’s likely to affect her life. What they have found is there is a treatment – SPINRAZA which is being trialled in the UK at the minute and are now campaigning to bring the drug to market as quickly as possible.
No donations are required all you have to do to help is like and share the facebook page to raise awareness and find further information on the gold seal website (links to both below). If we all send a letter to our local MP requesting the licensing of SPINRAZA in the UK we may just may a difference to Kaysey and the 2,000-2,500 other people it affects int he UK every year.
For more information about Kaysey and how you can help others know about this disease, please click the links below.
https://www.facebook.com/KayseySMA/ This takes you to Facebook
http://www.goldseal.org.uk/Kaysey.html And this is for the ones that don’t have Facebook it takes you directly to the back of our site where you can send the letter to your MP. There is a visit counter at the bottom. But sending the letter to there MP is what it is all about.
http://www.nhs.uk/conditions/spinal-muscular-atrophy/Pages/Introduction.aspx - this takes you directly to the NHS website for more information.