When sporty Swanage teenager Emily McDonald went into hospital to have her appendix out, she couldn’t have imagined it would lead to a living nightmare which has left her barely able to walk.
But because of faulty nerve systems in the brain sending out messages to Emily’s body advising it of excruciating pain, she is still suffering from a phantom appendicitis two years after the organ was actually removed.
Emily has always remained positive despite her many stays in hospital
Backing of World Cup star Beth Mead
Her condition, complex regional pain syndrome (CRPS) has worsened over that time to cause stroke-like symptoms in an arm where she had an injection and constant burning sensations down a leg where she had acupuncture in an attempt to relieve pain in her abdomen.
In a final attempt to get her life back, Emily and her mother Andrea are trying to raise £70,000 to take them to the Spero Clinic in Arkansas, USA, which has carried out groundbreaking medical work to reprogram the errant nerve system.
In less than two weeks, their GoFundMe page has received pledges of more than £8,000 and friends, family and businesses in Swanage and Wareham are organising events to get them on their way as soon as possible.
England world cup star Beth Mead and the other Lionesses are also rooting for Emily, with Beth sending her WhatsApp messages several times a week to keep her focussed on her physiotherapy and positive about making a recovery.
Staff at the Spero Clinic in Arkansas, the world’s leading centre to treat CRPS
The world’s most painful syndrome
CRPS is known as the world’s most painful syndrome and has even led to a number of young people taking their own lives because of the agony.
But although there is still much to discover about it, the Spero Clinic has isolated a nerve at the base of the brain – the vagus nerve – which appears to misfire and send out pain signals which shouldn’t exist.
More importantly, with a three-month programme which includes stimulation of the vagus nerve using electric impulses, oxygen therapy, exercise and scar tissue treatment, they have been able to send 85 percent of patients back home walking freely and out of pain.
Emily was an active teenager and now just wants her life back
“I couldn’t be a teenager”
Emily McDonald, now 17, said:
“I had my appendix out in March 2021, a routine operation that changed my life completely, as I went from being the most active 14 year old to not being able to do anything for myself in a matter of days.
“I had run a cross country race the day before my operation and woke up afterwards thinking I would return to my old life but after a week all my pain came back.
“Over the next year I had two more operations and after the third one I woke up with no ability to stand or sit myself. I struggled even more with my walking and at this point I was fully relying on crutches for any movement and having to use a wheelchair for longer distances.
“This was so incredibly hard for me as it meant I couldn’t be a teenager, I couldn’t go out with my friends and I struggled with school because nobody understood me and what my day to day life was like.”
One of Emily’s greatest wishes is to be able to swim in the sea again
“It is like torture for her”
Mother Andrea, a nurse on the ward where Emily had her first operation, said:
“We see a lot of patients with what we call the appendix walk, where they are hunched over, and Emily was doing it all the time so the physios suggested she had crutches, thinking it would be a short term thing.
“I love the NHS, I think it’s amazing, but we had to convince the consultants that Emily was going through agony – her brain still thinks she has appendicitis, even though she doesn’t have an appendix any longer.
“It’s not that it is in her head and she’s making it up, it’s that the nerves are not switching off, just like with the pain in her arm because her body is on high alert and has been stressed.
“We are really close as a family and it is difficult seeing your daughter cry with pain every day. Emily was a really active teenager who loved sport and now can do so little.
“We went down the beach yesterday and she was crying because she just wanted to run down to the sea and go swimming – it’s like torture for her not to be able to do that.”
Emily has been given the VIP treatment by Arsenal ladies at the Emirates
All the stars of Arsenal have promised to follow her progress back to recovery
Fundraising hike with 35kg weights
Treatment at the Spero Clinic could take up to 14 weeks and Andrea and Emily are hoping that £70,000 can be raised in time for it to start at the beginning of January 2024, having already had to turn down a place there in November.
Wareham Golf Club is organising a fundraising day and quiz on Friday 6th October 2023 to help Emily’s appeal, and Gee Whites will be doing a sponsored hike from Bournemouth to Swanage – with weighted bags of 35kg – on Saturday 9th December 2023.
Many other events including bingo and quiz nights are being planned and the family hope that local people can support these and raise money while having fun.
Support for the appeal is also coming from the Arsenal and England ladies football teams, and Emily’s prize possession is a pair of boots that Beth Mead wore in the European championships in 2022.
They are providing the inspiration for her to recover full fitness and play football again, and her dream of becoming a TV sports commentator is also driving her forward.
Emily with the football boots given to her by World Cup star Beth Mead
TikTok video as a shout out to Arsenal
“I really love my football, and I thought that I might be able to kick a ball as part of my physio, so my sister did a TikTok video of it as a shout out to Arsenal ladies football team and it got 1.8 million views.
“Literally the whole team saw it and I have been to ten games all given to us by Arsenal or England. I’ve met the Arsenal team and the Lionesses, Beth Mead messages me every day and if I’m having a bad day or really struggling it helps so much.
“Beth and Vivianne Miedema from Arsenal facetimed me, Beth sent me her boots and they have kept in contact with me ever since. If you told me last year that Beth Mead would be messaging me I wouldn’t have believed you!”