Kilburn mother facing further £15k funding hurdle for Bailey’s Wish
PUBLISHED: 16:41 18 March 2016 | UPDATED: 17:29 18 March 2016
A Kilburn mother who is fundraising £30,000 to give her four-year-old daughter Bailey life-changing surgery now faces a further fundraising hurdle after she was told vital aftercare would cost £15,000.
Shermel Walters-Lawrence, 26, was “shocked” to be told at Great Ormond Street last Sunday that on top of the £24,695.97 already raised she will also need to fund six to nine months of physiotherapy as well as further treatment on little Bailey’s hips, ankles and knees to ensure she has the best chance of walking normally.
Ms Walters-Lawrence said: “I was a bit devastated when I found out about the £15,000 of aftercare as it felt like we were just coming to the end of the road with the operation and now this.
“Everyone has worked so hard for Bailey and I’m so so grateful, I was quite annoyed at first but I snapped out of it with the lovely vibe of the music night and I’m just determined that together we’re going to get the £30,000 then continue fundraising. I’m not feeling scared about it because I know I have to make it happen. So many people have been so supportive.”
Bailey’s family has just two weeks left to raise the remaining funds for selective dorsal rhizotomy (SDR) surgery at Great Ormond Street Hospital after they were told NHS funding for a clinical trial of the treatment could no longer be found and she would have to raise the money privately.
Following SDR surgery, Bailey will remain in hospital for three weeks before embarking on course of physiotherapy costing between £48-£70 per session which works “hand in hand” with the initial procedure.
Bailey may also have to have a further operation to lengthen her lower leg and hamstring tendons.
In a bid to raise the remaining £5,000 before the April deadline, Ms Walters-Lawrence has organized a ‘Bowling for Bailey’ session for adults on March 24 in Stanmore featuring cocktails, games and prizes for the winning team.
She encouraged people to gather their friends,“get their best game on” and to contact her at Shermel@live.co.uk for tickets.
There will also be two more family fundays in Camden and Sudbury Hill on March 26 and 27 featuring easter egg hunts, raffles, bouncy castles and face painting.
Ms Walters-Lawrence’s says her family has also “sprung into action” to help fundraise the cost of Bailey’s long-term care, with her uncle offering to take on a sponsored run and others organizing dinner and dance and comedy nights.
She added that her daughter showed doctors on Sunday she was confident the remaining funds would be raised for her operation, telling them:“ Don’t worry, my mummy’s going to do it, it’s fine.”
A spokesman for NHS England, which funds the £2.5 million clinical trial into SDR said: “Current evidence is limited, but together with National Institute for Health and Care Excellence we are exploring SDR further through our innovative evaluation programme which offers treatment to a limited number of patients who meet the clinical criteria.
“Not only does this enable these children to have potentially life-changing surgery, but it also provides a real opportunity to gather the vital evidence we need on the procedure.”
A spokesman for Great Ormond Street Hospital for Children, NHS foundation trust said:“Great Ormond Street Hospital is one of the centres participating in NHS England’s evaluation process for Selective Dorsal Rhizotomy (SDR). This has enabled a small number of patients to have SDR funded by the NHS so that the effectiveness of the procedure can be assessed.
“Due to patient confidentiality we are unable to comment on the specific care requirements of individual children. Families may choose to arrange further physiotherapy in addition to the rehabilitation package provided after the SDR surgery. In some circumstances patients may separately require other surgical procedures, however, this would be assessed on a case by case basis and would normally fall under their standard pathway of NHS care.”
To donate see Bailey’s JustGiving page: www.justgiving.com/baileyswish/