The family of a four-year-old girl from Kilburn Park with cerebral palsy have been forced to raise £30,000 for a life-changing operation after NHS funding for the treatment was suddenly stopped.
Bailey Walters-Lawrence of Gorefield Place, was due to undergo selective dorsal rhizotomy (SDR) on her spine at Great Ormond Street Hospital to improve painful muscle stiffness.
She currently suffers from crippling spasms and struggles to walk unaided so was eligible for the procedure.
However, after two years of physiotherapy to prepare her muscles for the surgery, Bailey’s family was told in November that funding for the clinical trial of the surgery could no longer be found and unless they raised £30,000 to pay for it themselves by April, she faced a two-year wait before she could re-apply for NHS funding.
Shermel Walters-Lawrence, a mother of three and full-time carer to her daughter Bailey, said: “It was really heart-breaking and such a shock when they told us she couldn’t have her treatment.
“She was very distressed because she’s in constant pain and the drugs she’s currently on have given her a stutter and she slurs her speech. I honestly feel helpless that I am not able to give my child comfort.
“Another two years would be excruciating for Bailey to wait but they’ve said she’s still booked in for surgery in April if we can raise the money privately.”
Previous attempts to use Botox treatment to loosen muscles in Bailey’s ankles, legs and hips have failed, resulting in tendons snapping bones in her foot and forcing her to use a walking frame and wheelchair to play with classmates at Christ Church primary school in Regent’s Park where she receives one-to-one learning and mobility support.
Ms Walters-Lawrence, 26, has now teamed up with the Just4Children charity to appeal for help in raising the £30,000 cost of the operation by April this year.
She said: “My eldest son’s first reaction was to tell me he was breaking open his piggy bank for Bailey’s operation.
“We would be grateful for any donation, no matter how small. You would be donating towards a little girl being able to walk, play football and dance with less pain and without her walking frame.”
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.”
To donate towards Bailey’s campaign by April 1 visit justgiving.com/baileyswish.
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