Life-Changing Op for Lucy-Mae
Lucy-Mae’s 14 years have been eventful and heroic in terms of what she has had to go through. She was born with Spina Bifida and has been under the care of Great Ormond Street Hospital ever since. At 4 months she had her first operation to un-tether her spinal cord and nerve endings and we were told that the ‘wiring’ to her bladder and bowels was totally abnormal.
Aged 2 she underwent another major operation to enlarge her bladder and at just 5, she taught herself to self-catheterise so she could have proper play dates. Lucy-Mae will have to self-catheterise for the rest of her life.
Aged 7 she joined Chickenshed Theatre and, after playing a lead character at age 8, she declared that she wanted to be on the West End stage! With typical determination, at 9 she auditioned and won the lead role in the RSC’s production of Matilda the Musical. She took to the stage for her first performance as Matilda in London’s West End when she was only 10 and played the role for 8 months.
Lucy-Mae as Matilda (copyright Royal Shakespeare Company)
Lucy-Mae spends as much time as possible dedicated to being the best that she can be as a performer and, since Matilda, has performed with the English National Opera, at the Theatre Royal in Bath as well as numerous productions and performances with Chickenshed Theatre, London Elite Dance Company, West End Musical Theatre and the New London Performing Arts Centre. Lucy-Mae also took the leading role in a short film for the charity Kisharon.
Lucy-Mae aged 14
As a young performer, Lucy-Mae’s life revolves around dance, drama and singing with a passion for musical theatre. Now aged 14 her GCSE choices include dance, drama & music and her desire is to continue with a career in performing.
Scoliosis and posterior fusion
Last year doctors confirmed that Lucy-Mae had stopped growing at a diminutive 4ft 7” and, although upsetting for her, she remained the positive person she has always been. Soon after, we were informed that Lucy-Mae had developed Scoliosis, (curvature of the spine), a condition that, without correction, will get progressively worse. Lucy-Mae’s curve, currently 55 degrees, will increase and stiffen leaving her bent over to one side if left un-corrected.
X-Ray of Lucy-Mae's spine - October 2016
The standard corrective treatment for Scoliosis is posterior fusion; the use of metal rods fused either side of the spine to the vertebrae to straighten the curve is a procedure offered by the NHS, but with the disadvantage of permanently limiting the flexibility of the patient. With Lucy-Mae’s curve this would mean being fused pretty much the whole length of her spine which for someone so dedicated to performance and dancing, would mean the end of her career aspirations.
A new hope - Vertebral Body Tethering
A pioneering new procedure available for Scoliosis sufferers, known as Vertebral Body Tethering (VBT), has been developed in America and was initially offered to Lucy-Mae by an NHS surgeon in London. With VBT, screws are inserted into each vertebra and tethered with a cord. The cord is then pulled taut to straighten the spine but as it is a cord and not a rod, full flexibility is maintained, and recovery time is greatly reduced.
Unfortunately, although VBT has been performed in America for some years, it is relatively new in the UK and after initial operations, the surgeons involved have reported back to the NHS who have now put a hold on all VBT surgery, including Lucy-Mae’s, for the foreseeable future while they analyse the findings. By the time the NHS will allow VBT surgery again, Lucy-Mae will be too old and too skeletally mature for the procedure here and will have no option other than posterior fusion.
This leaves us with 3 options;
1. Not operate
2. Posterior fusion
3. Travel to the USA for VBT treatment
Lucy-Mae’s consultant agreed that if she were his daughter, he would take her to America for this truly life-changing operation. We want to do everything we can to make this happen so she can follow her dreams and continue her career in performing arts, but the cost of the operation in America is prohibitive being estimated at between £150,000 and £175,000, a figure that we simply cannot afford.
If we are unsuccessful in raising the amount needed for Lucy-Mae to have this operation, we will of course return all donations.
In return for your support, Lucy-Mae pledges to be dedicated and work hard in order to make a success of her career in performing arts. As her parents we will of course be eternally grateful.
So, today is my one year anniversary since my surgery in NYC!!! I can’t believe it, this day exactly a year ago I was going into the surgery that literally changed my life and my future and what a year it has been!!! It was, of course, no easy task recovering and it came with many sleepless nights and painkillers but we got through it, me and my incredible mother, without whom I wouldn’t have made it at all. But this year some of my biggest dreams have come true, I had the pleasure of playing Lucy at the Ambassadors theatre in 13 the musical, performed in a one woman show and, in September, am attending the college of my dreams. So thank you from the bottom of my heart again to everyone who donated and helped me and believed in me - I love you all so so much and owe my life to you ❤️
Just under 4 months post surgery Lucy-Mae took her Grade 5 ballet exam and was presented an Outstanding Achievement Award for her strength, determination and tenacity from the teachers at West End MT - the performing arts school she attends on a Sundays.
AND this week, Lucy-Mae takes to the West End Stage again. 13 The Musical is on at The Ambassador's Theatre in London's Covent Garden. The show is on for just one week and Lucy-Mae has 3 performances as the show's nasty piece of work - Lucy.
If you would like to see how successful the operation was and how your donation has truly helped, please come and see the show.
Lucy-Mae's dates are:
Thursday 17th August at 10.30am
Tuesday 22nd August at 5pm and
Wednesday 23rd August at Midday
Please make yourself known to Lucy-Mae if you do see her after the show so she can thank you in person for helping her continue to pursue her dreams.
Lucy-Mae had her surgery a week ago today and it was a huge success as you will see from the before and after photographs of her x-ray and her back.
She has amazed the surgeons and nursing staff with her determination and resilience. She was discharged from the hospital on Friday and since then she has been walking a little every day. She has socialised with a few friends briefly and although this has tired her out, it has cheered her up immensely.
She is even back to singing non-stop although thankfully not as loudly as before (we are in an apartment after all!). This is incredible considering her lung was collapsed for the surgery.
I am beyond proud of my big girl and beyond grateful to each and every one of you helped to make this happen.
Part of these discussions have revolved around Lucy-Mae's spina bifida and the need for the American team to be confident that the operation will not have a detrimental affect to this existing condition. Having been seen by the original neurosurgeon who performed the operation when Lucy-Mae was just 4 months old at Great Ormond Street Hospital, however, we are pleased to confirm that he is happy for the surgery to go ahead.
So, now thanks to all of you; our many dear friends, family and supporters - we can confirm we have paid the surgeons fees, and secured a date of 3rd April for surgery! We cannot thank you all enough for enabling this to happen.
However, as a result of the surgeons concerns relating to the spina bifida, they have decided to change the venue of the operation to Mount Sinai Hospital in New York. This is obviously an incredible institution, with a brilliant reputation, but unfortunately is much more expensive than the hospital we had originally hoped to go to.
We would therefore be really grateful if you could continue to spread the word, and help us to get as close to our target as possible.
Thank you all again - we'll keep you posted.
Hi Lucy-Mae Beacock, I heard about you from a post on the Facebook Group "Scoliosis Cures and Pain Relief" that I run. I had a curve of 55 degrees and now it is 20 without any surgery but using the ASMI machine and Rolfing . I invite you to join the Group and have this non-surgical treatment in the UK
One year gone by eh? It was a pleasure to have helped you and My family and I wish you all the best. Live life to the full and enjoy college. Also well done to your mum and your family too.
I am SO glad to hear that everything went well and that Lucy-Mae is out of the hospital. Hope and pray that her recovery stays strong and that she is back to her old (or new and improved) self. And, Lucy-Mae, keep on singing - as loud as you like!
So very pleased to see the operation was a success and Lucy Mae is doing well. Such an amazing difference. I don't know you but have links through NLPAC, so humbled to see the bravery of children. Wishing you all every success for the future. X