Hi my name is rebecca-louise
Rebecca was born with spina bifida in 2008. This means Rebecca was born with part of her spinal cord, mucles etc on the out side of her body. At 3 days old Rebecca had her first operation which involved the doctors putting the spinal cord and muscles back into her body and closing the hole. As a result this damaged her spinal cord which means she cannot walk unaided. She has no bowel or bladder control and is catheterized every 3 hours day and night.
At 4 weeks old Rebecca developed hydrocephalus which is fluid on the brain. Rebecca was fitted with a VP shunt. This shunt is what keeps Rebecca alive. The shunt can fail at any time which has happened once. Rebecca's first shunt got infected 2 hours after it was fitted and her body started to slowly shut down she was rushed into surgery to remove it and had her second shunt fitted when she was 6 weeks old. This shunt is the same shunt she has in now. Rebecca is very lucky as we have friends with children who have had several shunts fitted due to infection or failure. By the time Rebecca was 6 weeks old she had had 3 surgeries.
Rebecca was also born with hip displacia and at 8 months old Rebecca had her 4th surgery this was to pin her hip back into place. Rebecca was put into a hip spica for 6 weeks. At 2 years old Rebecca had 5th surgery to remove the pins from her hip and the surgery outcome was very good as she has had no more surgery on her hips.
Rebecca's next surgery was to inject botox into her bladder as it was refluxing on her left side going back into her kidneys. Because of this she suffers with recurring infections. Rebecca has had 4 botox surgery following this.
Rebecca has had her 10th surgery at 3 years old this was to stretch her tendons in the back of both knees to try and straighten her legs this is because she cant use her legs so her muscles tighten stopping her in straighting her legs. This surgery failed and at 5 years old.
Rebecca had her 11th surgery this was to put pins in her knees to straighten them. She had the pins in for 6 weeks when she had them removed. Becca refused all painkillers when the pins were removed and was a very brave girl. She was then in plaster for a further 4 weeks. Rebecca's legs are a lot straighter after this surgery but she still needs help keeping them straight when she walks so she has to wear calipers (AFO's)
when Rebecca was 3 years old the NHS refused to buy her a wheelchair saying they were happy for her to be in a pushchair until she was 6. we could not allow this as she really wanted to be independant and play with children her age. Because of this we had to find £4000. But with a charity fireworks display with help from MLE pyrotecnics and Epic fireeworks we raised £1000 and the remainder from Newlife charity all helped us fund Rebecca's wheelchair and gave her the freedom she needed.
After waiting 4 years for the council grant to help us adapt our home for Rebecca so she can have freedom she needs at home, We have finally at a stage where they are ready to proceed. But we have to find £10,000 on top of the £32,000 grant they are giving us.
As parents we tried to give Rebecca a bit of normallity and treat her as any normal child. She goes to Mainstream school and is really working hard to prove the doctors wrong. She has made such an achevment considering the doctors tried to talk us into aborting her as she may be so disabled like a vegatable state. She has been so brave though all the operations and big changes in her life. 2012 we lost her younger sister to brain cancer. We have been so proud with how she has coped.
At the moment she has to crawl around the house due to the wheelchair being to big for the house. All her persnal care like cathiterisation is done on the floor and we need to carry her to the bathroom and bedroom each time.
Please take a look at what we need donations for and how you can help