Smithy Bridge man raises vital funds for partner's healthcare costs

A Smithy Bridge man has raised vital funds towards healthcare to improve his partner’s life after it was saved in 2019 with extensive surgery.

Martin Redfern climbed the equivalent of over three times the height of Mount Everest over the space of a week, raising hundreds of pounds towards partner Samantha Smith’s latest treatments.

Psychotherapist Samantha, who has Ehlers Danlos Syndrome (EDS), underwent lifesaving neurosurgery in 2019, thanks to the generosity of people across the world with various crowdfunding appeals.

EDS is a genetic condition where connective tissue holding the body together is faulty and too weak. Further related complications followed, which left her at risk of internal decapitation.

The only solution to prevent this was operations abroad, costing hundreds of thousands of pounds as there are no similar options available on the NHS. After several surgeries, movement was removed from Samantha’s spine by stabilising her vertebrae with fusion and hardware.

The operations saved her life, but, due to the weakness of her connective tissues and muscles, her quality of life has deteriorated with countless dislocations each day.

 

Read more: Samantha has been savedPublished: 17 May 2019
Samantha Smith: “I feel fixed”Published: 25 February 2019
Second surgery goes well for Samantha SmithPublished: 21 August 2017
Samantha Smith undergoes life-saving surgery Published: 15 July 2017

 

However, thanks to the EDS community, Samantha became aware of specialist non-surgical treatments – Regenexx Super Concentrated Platelet Rich Plasma and Next-Generation Platelet Lysate – which use components from a patient’s own blood to stimulate repair in the damaged area and encourages strengthening in the ligaments or tendons.

The process involves extracting a patient’s blood and running it through a machine to separate it. Red and white blood cells are removed, leaving behind plasma and platelets. The platelets are highly concentrated and extracted before being injected back into the patient at the damaged site.

The Regenexx company says the platelet lysate treatment is comparable to a timed-release pill, making it better suited for treatment around nerves and the spine as it doesn’t cause inflammation.

 

 

Mum of two Samantha has now started the specialist treatment at Algocells in London, the only place in the UK where this is offered, which is already improving her quality of life.

The Algocells clinic is one of just 50 worldwide which offers the Regenexx treatments, and is run by Dr Zbigniew Kirkor and and Dr Martynas Juozaitis, who have been trained by Regenexx’s founder, Dr Centeno.

Dr Kirkor was previously a full time NHS consultant anaesthetist before moving into Regenexx three years ago, after discovering it on LinkedIn.

Typically, around 50% of Dr Kirkor’s patients are treated for neck and hypermobility disorders, whilst the rest are treated for joint conditions, osteoarthritis, disc problems and lumbar issues.

Dr Kirkor said: “Traditionally pain is treated by addressing the symptoms, not the root cause. This includes steroid injections and cutting the nerves, but was limited to certain structures in the body. We were unable to address ligaments, for example, which can still be very painful. Any structure which is innervated can be a source of pain.

“Regennexx allows us to address not just pain, but the cause, enabling us to treat structures that we were not able to with traditional methods.

“The platelet rich plasma works in two ways, by killing the inflammation, the source of pain, and treating it. Any neck instability or hypermobility can see a very good application of treatment. It can make ligaments stronger, reduce the hypermobility and reduce dislocation.

“The treatment can address certain background issues causing the problem. It’s not a quick cure, but we can help with problems of hypermobility – so far the results are encouraging. Certain conditions which were treated with surgery, such as a meniscus tear in the knee joint, can be treated with stem cells.

“It’s not a new drug; it’s your own tissue. It brings to mind Hippocrates saying that the natural healing forces are within our own bodies – and he was right. He didn’t have the tech which we do now to bring this to life.

“With PRP, we have an abundance of good strong evidence that it works with certain conditions, but stem cells are still an experimental treatment. Initial studies at the Mayo clinic treated people with severe spinal cord injuries who were bedbound, and they started walking again, which is incredible.”

Costing £2,000 each time, Samantha has had treatments for her shoulders, sternum and a crushed occipital nerve – and hopes to be able to undergo similar treatment for her skull – which wasn’t operated on – in Colorado.

She said: “After 48-hours, I could already see an effect. I’ve gone from dislocating more than 20 times before I’m out of bed to around once a day. I’ve seen a lot of improvement through being able to treat the destabilised parts.

“Lots of people can benefit from one treatment. My first one wasn’t as painful as I imagined, but I didn’t feel too bad in the days afterwards, which shocked me. I didn’t know what to expect. The second and third treatments felt rough and I did have a flare-up, but I knew I hadn’t dislocated.

“I’ve carried on with no quality of life for many months and it’s become unbearable. When I learned I could try this, I was scared to be hopeful. It’s almost like a trial test to see if it works and if it has a chance of working higher up.”

 

 

However, as Samantha’s muscles have been compensating for her connective tissue, placing them under extra pressure as a result, she has found herself dislocating numerous times a day. Her skull – which was not operated on – is slipping, meaning that Samantha will have to see a neurosurgeon again to see what can be done.

Whist the initial Regenexx treatments have been paid for, Samantha knows further costs will come, as she needs to undergo scans in Barcelona. The scans themselves will be done in Barcelona rather than the UK as they are of a higher quality whilst costing less.

Once these results are in, the scans will be sent to a specialist in Colorado to treat her spine and cranial cervical junction at the top.  Because her neck is so complex due to the prior surgeries, she will need to see another specialist in the USA.

She added: “The doctor in Colorado trained the doctor I’ve been seeing in London, and he will work alongside the neurosurgeon I saw in Arizona.

“I’ve known what has been happening for a long time. I’ve tried everything and I’m not getting better in that area; I can’t risk letting it get to the point of needing surgery again.”

Sam believes she will likely need a mixture of treatments and stem cells injected through the back of her throat to help; the existing hardwear from her previous operations would make it impossible to treat from her spine.

As costs depend on the results of the scans, it is not yet known how much will need to be raised – which is why Martin, who has been in a relationship with Samantha since 2020, set himself a mammoth task to get the ball rolling. An initial target of £15,000 has been set to cover the imaging and consultation fees.

Throughout November, Martin borrowed a resistance climber and awoke at 4am for a whole week to climb the equivalent height of Mount Everest three-and-a-half times over. In total he climbed over 182,000 steps, raising over £800 which was later match funded to raise £1,603.

He said: “Sam lives in immeasurable pain 24/7 and she has no choice to opt out. She adapts and tries to hide it to avoid people feeling helpless or uncomfortable with her struggle, but she doesn’t get to rest it away. We appreciate everyone’s support so much.”

Sam added: “There are no guarantees but it’s a positive response so far. I didn’t dare get my hopes up but I was confident he could help. Because I had such a fast reaction to treatment, I did panic I wouldn’t maintain it, but I was told that was good because it was working.”

Donations can be made via PayPal:

• https://www.paypal.com/paypalme/savesamantha