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This is Ruby Willow Crowther, she is just about to turn 8
years old. Ruby has a neuromuscular condition called Spinal Muscular Atrophy Type II - this is a genetic condition affecting
the way the nerves carry messages to the muscles. Without regular physio and equipment such as standing frames and splints
for the feet, the muscles become wasted and atrophy, hence the name. Ruby is an incredibly intelligent little girl,
she has a wicked sense of humour and is always happy. We are very blessed to have her and want to make her life as inclusive
and fun as possible. At present there is no cure for SMA, there are some promising therapies in the pipeline but genetics
is a minefield and every breakthrough is incredible slow due to rigorous testing and the length of time it takes to do trials
on new medicine.
Ruby had major spinal surgery on June 5th 2013 - this involved using a new system called the "Shila"
- it is metal work put on the spine to train it to grow straighter. Before surgery Ruby's spine was measuring a
curve of 110% and it is now 53% - still curved but now she does not have to wear a skin suit and she can sit unaided.
The downside to surgery is that all her seating has changed and as we bought a fabulous wheelchair privately thanks to help
from family, friends and community, it means that we have to fund a new seat to go on the wheelchair base. We also want
to buy her a bike trailer with more support so she can come on family bike rides.
If anyone is unsure of
what the condition is or wants to know more about it, please click on the link below. Spinal Muscular Atrophy Support
UK (formerly The Jennifer Trust) is an excellent source of knowledge and support - it links families living with the condition
and puts on a conference every year where we can learn about new therapies being trialled or where we can meet other parents
and share knowledge and information.