shine has provided us with expert medical advice, support and physiotherapy sessions for Annie and it is all for free. They have been invaluable to us, especially in the early days when we didn’t have a clue what her condition would in tail. We wanted to raise funds to say thank you.

Annie’s condition is spina bifida of S1 with associated low lying and tethered spinal cord and a dermal sinus tract. She had surgery to remove and close the dermal sinus tract and she recovered very well. Her tethered cord condition has lead to another condition called Syringomyelia, due to the spinal fluid not free flowing around as it should. She had another MRI recently to see if it’s progressing or if it’s stayed the same and unfortunately the fluid inside her spinal cord is getting wider, this means surgery is on the horizon, this would be to, put it simply, deteather her spinal cord from her spine. They want to prolong the surgery for as long as possible, because she is so small, it increases the risk of an already risky procedure even more. So she is currently being monitored for her symptoms and if she regresses she will be going straight down for the surgery. The urgency would be, because when nerve damage occurs and her function is damaged it very rearly comes back.

Shine are at the end of the phone when ever we have questions regarding the management of her everyday life, we use this service a lot and we are very grateful to them for that

As she grows her condition can worsen but we take each day at a time. She is an absolute joy to have around and she has completed our family ❤️

Shine provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff. Shine enables people to get the best out of life.

Everything we do is made possible by our generous supporters. Your fundraising efforts help individuals and families in your local communities across England, Wales and Northern Ireland. Every donation has the potential for profound impact.

THANK YOU for supporting Shine!