Support Mandy

Give A Tomorrow

Mandy Needs Your Help

Mandy dedicated her life to helping others, but over the last two years her health and independence have deteriorated rapidly due to instability in her spine. This strong, selfless woman now needs to raise £60,000 to fund neurosurgery which will keep her with her family. Give Mandy a tomorrow.

Mandy was an active and outgoing person who would do anything for others. She had two jobs, both supporting local young people, and was studying towards a Master's Degree in Counselling. She hoped that this would allow her to further increase the positive impact she could have on the lives of people who were struggling in her community.

In October 2014 she started experiencing a number of symptoms including unrelenting, severe headaches and debilitating vertigo which prevent her from standing for any length of time, forcing her to give up her work and study. Her symptoms worsened over the next 18 months as she developed Postural Tachycardia Syndrome (POTS), a condition which causes her heart rate to more than double whenever she stands up, and problems regulating her blood pressure. She was diagnosed by a specialist Rheumatologist with Ehlers-Danlos Syndrome (EDS), a rare and incurable genetic disorder which causes the production of faulty collagen in her body, making her joints and other connective tissue throughout her body too stretchy. After paying privately to be scanned in the UK's only upright MRI scanner it was also discovered that the stretchy ligaments in her neck were leaving her spine and skull unstable causing her vertebrae to dislocate and crush her brain stem and spinal cord causing irreversible damage and the daily possibility of paralysis and even death.

Over the last two years Mandy has gone from a full and rewarding life to an lonely, isolating one, unable to leave the house or perform the normal tasks of daily living and forced to wear a neck brace. She suffers daily from:

  • Constant and severe neck, head, eye and shoulder pain caused by spinal instability called Atlantoaxial Instability and Craniocervical Instability,
  • Heart arrhythmia, tachycardia and irregular blood pressure preventing her from standing
  • An array of neurological symptoms such as memory loss, tremors and numbness
  • Difficulty regulating body temperature and other autonomic bodily functions due to compression of her brain stem

In order to prevent further damage to her brain stem and try to correct some of the problems she already faces Mandy urgently needs surgery to fuse her skull and vertebrae together. This will stop her skull sliding too far and stabilise her vertebrae so they can no longer dislocate with every movement, both of which are currently compressing her brain stem. This is a very complicated surgery, which involves inserting screws through the bones which protect the spinal cord and brain and is made more complicated in Mandy due to her EDS. There are currently no EDS specialist neurosurgeons in the UK able to perform this operation.

Mandy's UK neurosergeon agrees that her only hope is to raise £60,000 to travel to Barcelona to have the operation performed. This surgery is life saving, the longer she goes without it the more she will decline and the consequences are extreme as total brain stem compression can cause death. It is very important to raise the funds before other serious side effects such as paralysis set in as she will no longer be a candidate for surgery.

The £60,000 raised will pay for:

  • The surgery
  • Pre-op scans
  • Hospital stay including two nights in ICU
  • Post-op scans
  • All required medications during the stay
  • Complications insurance
  • Specialised accommodation for the duration of post-op care

"Her clinical status with regards to the cervicomedullary syndrome is advanced, hereby the reason to stress on the need of having surgery as soon as possible. Actually, we think that there is no chance of improvement without surgery, and probably her condition will only decline as time goes on." - Medical Report, Hospital Teknon, Barcelona

Your help will ensure that the rest of Mandy's life can be full of the things that make life worth living such as having much longed for children, spending time with friends and family and helping others.

We would love for you to be a part of Mandy's story and put a smile back onto her face.

Read More
Donate Now
£27,326
of £60,000
from 546 donators
Recent Donations
£270
elaine brown
"Mad Hat Tea Party contributions"
£20
Natalie Ward
"Well Done Rich on 10k in 10 days, sorry to hear about your situation Mandy, hope you get the money you need xxxx"
£10
Anonymous
£5
Hannah Bowie-McLean
£5
Victoria Burton
"Stay strong & keep up the fight x"
£1,160
Hannah and Gary
"Money raised from the Alderly Edge 10k"
£23
Roots Cafe
£24
Newton Shop
£30
Anonymous
£10
Stephanie Hinde
"Went to school with your sister Tanya , hope you raise money and get the help you need xx"

Saturday Night

18th June 2017

This weekend is a busy one. Rich (of running fame) is also organising a charity comedy night in Chorlton which takes place on the night of Saturday 24th. The lineup is looking awesome and it's guaranteed to be a fun night. Pay on the door or get a ticket in advance.

On the very same night Lynda is putting on an 80s disco! Playing all the hits from the latest decade that I can't remember and serving many of the cocktails I have grown very familar with. It's being held in Urmston and you can grab yourself a ticket here.

Rich Runs 100k

13th June 2017

Our good friend Rich is running 10k per day for 10 days to help with fundraising. That's 100k! Hopefully he'll last the whole time, it's gonna get warm!

Funeral Collection

5th June 2017

Thank you Samantha, your family and friends, for raising money towards Mandy's surgery as part of your Dad's celebration of life. It was a very thoughful gesture. Also, special thanks to his close friends Roy and Joan who donated £100 after the event! Thankyou all for helping during a difficult time.

Persimmon Homes

15th May 2017

Today we've had some great news that Persimmon Homes have selected Mandy as a recipient for their April Community Champions fund! They have kindly donated £1,000 towards Mandy's surgery fund in order to help her get back to helping others in her community. This is such a great boost for us and puts of over the £15k mark, a quarter of the way to our goal! Thank you 🏡💓

A Little Update

12th May 2017

We've had a lot going on over the last couple of weeks; I (Matt) have had my last day at RetroFuzz, who also donated £500 💚 Ice House Hair Studio opened on a Sunday and donated all of their takings for the day totalling £600! Akinika in Preston had an office dress down day raising £155 and Auntie Mary has been selling cakes and managed to raise £160 (A lot of cake 🍰). We've also had some very generous anonymous donations recently which we're really thankful for.

Coming up over the next few weeks we have lots more events which you can see on the events page.

Thank you all for your ongoing support. There are a lot of people supporting Mandy by raising money and helping her to get the surgery she needs and we're grateful to every one of you 💕

Thanks M&Co!

22nd April 2017

Big thankyou to Tanya and M&Co who managed to raise massive £300 by putting on raffles and tombolas over the last month. 💕

10k Thank You!

18th April 2017

Easter Hamper Raffle

16th April 2017

This weekend Josie put together an Easter hamper and raffled it off at her work raising £112! It was won by two kids who, by the looks of the hamper, are probably now in a sugar coma. Thank you Josie x

Easter Events and Donations

15th April 2017

We've had a busy few days of donations and events. Today Amy, Keir and family were busking in Manchester and had a great day (despite the cold!) fundraising for Mandy. We've had lots of spare change donated recently! £127 worth from Matt's work and another £45 from Auntie Mary. All those coppers add up! We've also had a very kind donation from Sister Sheila who donated her retirement whip-round. Finally, a big thank you to Jemma and her sister who collected sponsorships for a birthday skydive and got to the ground safely. Thanks everyone! You're all so kind 💕 🍾

Clever Cake

10th April 2017

Thanks to Helen at Mad Science North West for putting on a cake sale and raising £21.50. Every pound is another step towards Mandy's surgery 🍰 🙌

Frenchester Feast

9th April 2017

A big thank you to my friend Pauline for hosting a French Supper Club to fundraise for my surgery. She had wonderful help from a team of people including Caroline, Simon and Martin as well as Sian who also offered the use of a gorgeous looking space. They raised £310 and served 18 guests in two sittings. A huge well done to everyone involved and thank you to all the 18 who attended and gave so generously, I am incredibly grateful 💜

Surgery Booked

6th April 2017

Following on from my appointment last week with a UK neurosurgeon I have been talking with the Barcelona team. It is apparent I need this surgery very soon. The next available time would be either early June or September. June wouldn't give me enough time to complete all the pre surgery tests or to fundraise the amount I need. So my surgery date is September 25th. Originally I was to be fused from my skull to C2, the second vertebrae in my spine, it is now confirmed that I need to fuse down to the fourth vertebrae, C4. This is scary because it limits even more movement in my neck but they need to be stabilised as my bones are moving out of place and also putting pressure on my spinal cord at this level. It's really strange to know I will be having major and complex surgery in a matter of months. Thank you everyone for your support and kindness and to everyone setting up fundraisers right now. Matt and I are confident that with all your amazing efforts and help we can reach this goal. 💜

A Tough Week

31st March 2017

This week has been a tough one. I had an appointment with a specialist neuro surgeon here in the UK to talk about care after surgery. We went through my symptoms and scans, I was shown how badly I dislocate when I look left and right, which is of course extremely dangerous. He did another neurological exam and things are deteriorating quickly. My last exam was in Barcelona in December and since then my limb weakness and numbness has worsened significantly. My reflexes were also much more hyper-reflexive in my arms and legs which indicates more damage to my spinal cord and need more tests. I was also told again with absolute certainty that fundraising is my only option for surgery and confirmed what I already knew that there is no surgeon in the UK currently able to operate on EDS patients. Even though I know this information it is always very hard to hear. I have a wonderful team behind me, it's just so frustrating that they are limited in what they are allowed to do for me. I am so scared that I'm going to keep declining at the rate I am because I feel myself getting sicker and I worry about my future without surgery. This is an impossible situation and I'm very grateful for all the on going support. I'm going to be resting a lot this weekend, I'm very tired and in a lot of pain from the journey.

Fabulous Unicorn Parties

15th March 2017

One of my oldest, funniest and very loved friends threw a glittery unicorn party to celebrate Sydney Mardi Gras and raised a huge amount of money for my surgery. £1,135.04! This was a combination of Dan's incredibly kind hearted friends as well as a very generous donation from Dan himself. This is very special because the Sydney Gay and Lesbian Mardi Gras is all about standing for equality which has an important place in Dan's heart, yet he still had space to make the day about raising money for me too. Thank you to each and every person who contributed, you're all wonderful
🦄💜🦄

We've Reached £6,000

10th March 2017

£6,006! A huge thank you to everyone who has donated so far. I really try to thank each person individually by email through the YouCaring site but I am struggling to keep up with it as my symptoms are getting worse. I just need to say to everyone that if you haven't received an email from me I am very sorry, and I do appreciate your donation massively. You're all wonderful and I can't tell you how amazing it is to see so many of you wanting to help me.

Article in The Stockport Express

8th March 2017

The Stockport Express wrote a story today about Mandy's condition and the fundraising campaign for surgery. It's really important to us to improve awareness of rare conditions like EDS, CCI and AAI, and the extra support that their sufferers often need!

Taking on Tough Mudder

7th March 2017

Matt and his friends Sim, Keir and Amy are running Tough Mudder in July to help fundraise! It's a while off yet but plans are afoot to keep you entertained during that time. Thank you! And try not to injure yourselves!

Win A One-Of-A-Kind Placebo Eastpak Bag

5th March 2017

We're giving away a one-of-a-kind Placebo Eastpak bag! All you need to do for a chance to win it is donate £5 to Mandy's fund and leave a message containing the word PLACEBO. Make sure you provide a valid email address and DO NOT set your donation as anonymous.

In 2012 Placebo and Eastpak joined forces to create a limited edition line of bags and luggage. Unfortunately, these bags never made it to the shops and only one of each style was produced. We believe that this bag is the only one of these collectors items ever created.

For full details and photos have a look at the competition page.

Good luck and thank you for helping Mandy reach her goal!

Mandy Gras - A Fundraiser Down Under

2nd March 2017

This Saturday our favourite honorary Australian Dan is throwing a Mandy Gras party and fundraiser for us. We expect it to be glittery. You can see what he gets up to on our Facebook page! Thanks Dan!

More News
Donate Now
£27,326
of £60,000
from 546 donators
Recent Donations
£270
elaine brown
"Mad Hat Tea Party contributions"
£20
Natalie Ward
"Well Done Rich on 10k in 10 days, sorry to hear about your situation Mandy, hope you get the money you need xxxx"
£10
Anonymous
£5
Hannah Bowie-McLean
£5
Victoria Burton
"Stay strong & keep up the fight x"
£1,160
Hannah and Gary
"Money raised from the Alderly Edge 10k"
£23
Roots Cafe
£24
Newton Shop
£30
Anonymous
£10
Stephanie Hinde
"Went to school with your sister Tanya , hope you raise money and get the help you need xx"