Friends and family of Emily McDonald joyfully reunited with the 17 year old in Swanage, Dorset, after medical treatment in the US allowed her to walk again free from pain.
Swanage and Purbeck raised an incredible £75,000 in less than six months to send Emily to the Spero Clinic in Arkansas, the only centre in the world to treat complex regional pain syndrome (CRPS) and now the brave teenager is home to repay a town’s belief in her.
Hugs aplenty at the surprise party at popular Swanage venue Gee Whites, as Emily meets family friends after five months in the USA
Emily and Andrea McDonald back at home in Swanage after an emotional journey of three years
A mission to spread the word of hope
CPRS had left Emily unable to walk since a routine appendix operation in March 2021 started a chain of events which robbed her of much of her teenage years.
But after five months at the Spero Clinic, Emily has left her wheelchair and crutches behind and was able to run to greet her friends at a surprise party on Saturday 1st June 2024 at Gee Whites thrown by manager Dan Chambers, who tirelessly helped to raise funds for the treatment.
Days away from her 18th birthday, with CRPS in complete remission and life restoring treatment behind her, Emily now not only has freedom to become a teenager but also a mission to spread the word of hope that the Spero Clinic holds for sufferers.
According to the family, the NHS barely recognises the existence of CRPS, and its advice to Emily over the years of suffering was to live with the pain as it wasn’t going to go away.
Yet according to a study by Bath University, many people in the UK suffer with the syndrome – possibly up to 16,000.
After a three-year battle to be treated in the UK, Emily and her mother Andrea McDonald, a nurse by profession, now know that just a referral from the NHS to a private specialist could have put them on the road to Arkansas so much earlier.
Emily on Day One of her treatment in January 2024, with wheelchair, boot and crutches
The Spero Clinic had 15 types of physiotherapy for Emily as well as an holistic approach to medication
Retraining the brain
Emily had hour-long sessions of neuromuscular reeducation physiotherapy every day in which electric currents were sent into the affected parts of her body.
Emily had to learn to tolerate the pain, correct the contractions it causes in her muscles and try to make another movement through it, like gripping and releasing a towel.
By controlling the movement and tolerating the pain, her brain was retrained over weeks to understand that pain was coming from the machine and to realise that it could override the pain and move through it.
Cold laser therapy, a relatively new but expensive treatment which helps with cell metabolism and cell regeneration, proved remarkably effective and allowed Emily to set and achieve ambitious weekly targets like taking off a protective boot, wearing socks and shoes again and finally walking.
Although Emily may have to return to the Spero Clinic in six months for a two-week retune, doctors there are confident that she should stay free of CPRS if she keeps active, hydrated, continues taking supplements and keeps her body from getting shocks like freezing temperatures.
Cold laser therapy, a relatively new treatment, seemed to have a particularly good result for Emily
A lot of pain and a lot of gain for Emily on a 19-week road to recovery in Arkansas
“Em gave it everything”
Andrea McDonald said:
“It was very tough, really hard work, but Em was determined she was going to get better and on the very last day the main therapist came up and said if everyone had her positive attitude and determination to get better, the Spero Clinic would have a 100 percent rate.
“Em gave it everything, even if she was having a bad day. The clinic was just amazing and it was so good to be surrounded by other people who were going through the same thing.
“Because everybody has been told it was in their head, and has been rejected by medical consultants, it was really refreshing to be surrounded by people who understood.
“When she walked in without a boot the whole room started clapping and when she walked in without crutches everyone was crying! Because these people have been through the process, they know how hard it is to walk without crutches after three and a half years.”
After a difficult start the results began to show, first with Emily shedding her protective boot
Eventually, Emily was able to wear normal socks and trainers, and walk with the aid of crutches
And finally, the joy of being able to stand upright again without any help
“Every penny helped me get my life back”
Emily McDonald added:
“Now I just want to live life without limitations, not having to think about what I can do and can’t do. Yesterday we went for our first family dog walk, I’m going to London to see my sister Megan, and I’m going to Germany in September to work with Adidas for a while.
“But I wouldn’t have been here without Swanage and everyone sharing my story and donating, every part of every fundraiser was important, and every penny helped me get my life back.
“Everyone clubbed together, and you couldn’t walk down the street without someone stopping you and saying they wanted to help, I am just so proud to live in a place like this.
“Because it’s such a small town it was more personal, I think if we lived in London we wouldn’t have got this response. Everyone can now see what they have done, because it was thanks to them that I am able to walk again.”
And before leaving Arkansas, Emily was able to experience normality again, like wading in a waterfall pool
“What a special place we live in”
Andrea continued:
“We have truly learned what a special place we live in and what special people we are surrounded by – and if we can also help other people by raising awareness of the condition we might stop them suffering in silence.
“The first two months were awful, I cried every day because of the pain that Emily was going through and I wasn’t even sure that it was going to work, but because of the time difference I couldn’t speak to anyone back in the UK about how I was feeling.
“We had hope, because it was our last hope, but equally we did wonder whether we had done the right thing. There were lots of sad tears initially, but after that there were lots of happy tears.
“When she arrived she was sat in her wheelchair and asked by the staff what her goal was and she said she wanted to give someone a hug with both arms and play football with her cousin.
“As soon as she could move her affected arm I got the first hug and it was the best hug I have ever had, like all my Christmases had come at once. It is such a weight that has been lifted.”
Welcome home, Emily, with love from Swanage!
Signed up to abseil the Spinnaker Tower
Now Emily wants to stop others from suffering in the same way, and has signed herself up to a charity abseil down the 170 metre tall Spinnaker Tower in Portsmouth to raise money for a friend who is suffering from the same condition.
She hopes that a TV news programmes will be interested enough to film her and will help her spread the word about a way forward for victims of CRPS.
Emily finally passed out from the Spero Clinic with her CRPS in full remission
“Realised what I had let myself in for”
Emily said:
“There’s a boy called Joshua who we met in Bath who has CRPS in his back and we told him that he needs to get to the Spero Clinic. I showed him everything that I was able to do, so they have now started fund raising to get him over there.
“His dad told me that he was going to abseil down the Spinnaker Tower and I was like, I’ll do that! Then I had to check what the Spinnaker Tower was and realised what I have let myself in for.
“But I think it will be really helpful to them to be able to see what can be achieved by the clinic they are fund raising to send him to, as I used to be in the same position that he is now.”
Emily in the UK – the NHS had no way to treat her and advised she learned to live with the pain
“Find the clinic and end the pain”
Andrea added:
“They have reached £20,000, and we thought that if we joined the push when Emily’s story was complete it might help boost their funds.
“Emily was always chatty, but Joshua has just gone in on himself and I told his mother that as a mum and as a nurse I thought she had to get her son there as quickly as she could.
“Joshua sent a WhatsApp message to Emily telling her that for the first time he thought he was going to get his life back. It was the sweetest message and it just made us cry.
“I’m hoping the abseil might get on local TV, and spread the message – if the hospitals would only refer people to a private specialist rather than telling them to accept the pain and cope with it, they might find the clinic and end the pain.
“If we can get the message out and people just look at the Spero website to see if it might help in their case, if we can get a diagnosis of CRPS for just a couple of people through raising publicity and awareness, we will have achieved so much.”
Further information
- More about the work of the Spero Clinic
