SO.... we made it my little girl can have her operation...as many of you may have read in the media Bailey's after care plan has to be self funded as post SDR required rehab has been rejected by the local commissioner. This is another blow to what already seems a living nightmare for me as her mum but to the community as we tried so hard to pull together to make Bailey's operation happen! I have luck on my side that we have a bit more time to pay for Bailey's aftercare but the physio and treatments required post surgery are imperative to have fully functioning results from Baileys SDR operation.
Baileys after care is a combination of several therapies most importantly physiotherapy and hydrotherapy which is between £50-£70 an hour 3/4 times per week for the first year alone...the continuing fundraising will be contributing to that as well as her new equipment and adaptations at home (very likely) additional surgery required such as tendon lengthening.
Many thanks for the support so far please continue to spread the word about Bailey's wish I will continue to push for my daughter please help me.
Baileys Walters-Lawrence (born 10th December 2011) had a full-term birth and there were no apparent signs of anything for concern, specifically any sort of brain injury. In the months following Bailey's birth, she was not achieving the usual milestones of many babies/young children so I sought expert advice and support. When Bailey was 18 months old, it was confirmed that she had Cerebral Palsy. She was unable to sit, stand or walk unaided - obviously devastating news!
In August 2013 it was suggested by Great Ormond Street Hospital ("GOSH") that Bailey was an ideal candidate for Selective Dorsal Rhizotomy ("SDR"), an operation used to improve spasticity (muscle stiffness) in Cerebral Palsy. It is the only procedure to permanently remove the spasticity in the legs, which is the primary cause of disability and long-term deformities. This is imminent. I was told the procedure would be funded by NSH England (£30,000). Obviously I was ecstatic as, FINALLY, there seemed to be some hope for Bailey's future which, until hearing of SDR, seemed very bleak. Things were set in motion for Bailey to have the procedure and it was felt that botox injections ought to be considered initially as this would aid with her muscle stiffness before embarking upon the procedure. The first of the botox injections took place in September 2014 - which seemed to alleviate a lot of Bailey's discomfort and brought hope to us as her family; the second round (after a 5 month interval from the first) sadly had no affect whatsoever. Although upset by the outcome of the second round, I was undeterred as Bailey was still to undergo the actual SDR procedure later in 2015.
November 2015 was when Bailey was scheduled for her pre-op assessment with the neurosurgeon who would perform the procedure at GOSH, Dr Kristian Aquilina. On arriving at GOSH it was only then was I told that, unfortunately, Bailey's SDR had been cancelled as the funding had been withdrawn! Mr Aquilina voiced his concerns about the way in which it had been withdrawn and told me that he had put forward an appeal to NHS England as he believed that Bailey was ready. Sadly, the appeal was rejected by NHS England and GOSH will now have to reapply in 2018 to see whether they will be successful in obtaining the funding for SDR!!
This has now left me in a situation where I am facing the almost impossible task of raising £30,000 personally (GOSH have said that Bailey can still have SDR but the dates they have given her are 1st April 2016 or 16th April 2016 - less than 2 months away)!! Bailey is the second of my children: I have a son of 7, Shea and a baby, Kasey, who is soon going to celebrate his first birthday. It is challenging for the families of children with Cerebral Palsy and is heartbreaking to see them in such discomfort and feel there is nothing you can physically do to help them. Between September 2015 and the last 2 weeks Bailey has actually snapped the bone and tendons on her right foot which has now made it impossible for her to weight-bear and she is walking on the side of her foot to alleviate her pain. She is now in a lot of discomfort and there is not much more I can do to help her, aside from give her painkillers. To hear a child so young telling you that "it hurts", "everything hurts" is absolutely heartbreaking. I am so overwhelmed with sadness and have a feeling of total helplessness for Bailey.
I truly believe that this procedure is what is necessary to see my Princess Bailey walking and hope that by sharing my story you will find it in your hearts to help a little girl achieve a dream she so deserves - to walk!!
Please share Bailey's story with as many people as you know - by doing so, you will all be playing a part in making all our dreams for Bailey a reality.
Thank you so much.
xx
