Melanie's Mission To Live- Ehlers-Danlos Syndrome

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Melanie's Mission To Live- Ehlers-Danlos Syndrome

To raise funds to fund specialist treatments not available on the NHS & raise awareness! This has lead to severe cranial, neck & spinal instability.

DONATE:
BACS (PM me)
💜 https://gofund.me/b6fe4799
💜Or https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜[email protected] via paypal friends & family Description - long version
Mel is a 32yr old bubbly young lady who graduated in Biology from Newcastle University. She live's in Cramlington, Northumberland & has always aspired to become a primary teacher! She suffers severely from Ehlers-

Danlos syndrome (EDS), & many other conditions, causing all her joints to dislocate especially those in her spine & neck. She had a severe case of Cranio- Cervical instability (CCI). Meaning her skull &brain were sinking onto her spine like“ a pumpkin on a toothpick”. She a had lifesaving cranio cervical fusion and full spinal fusion but sadly the fusion was broken in two places during a knee surgery in the U.K. We are desperately trying to £100K by October 2020 for the surgery needed to fix her broken fusion, to save her life!
… the only thing currently keeping her stable, breathing and seizure free is her halo and it is not a long term solution- but without it she will die, unless she can have this surgery to stabilise the broken areas anteriorly! DONATE:
� https://www.paypal.me/melaniesMission2Live

�https://www.gofundme.com/MelaniesMissionToLive

� http://www.melanies-mission-eds.org.uk/donate-now/

Link to my online shop:

�http://www.melanies-mission-eds.org.uk/shop/

18/06/2026

🎯45%-£42,102 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

This week was set to be a wholesome one!

I had a lovely night out and some lovely people put donations in my fund which is massively appreciated!

Then I had my nephew to cuddle and feed on Monday, Tuesday I went to the park with my honorary niece and nephew…. And managed to dislocate my good ankle! 🙈

Only me! Totally my fault too, I wasn’t feeling well and put my leg up on a metal park bench, knocked the joystick and my chair lurched forward and to the left and wedged my foot… which got twisted to the right and gave an almighty POP and crack!

So after hospital trips and X-rays they said it looked like it’s dislocated and popped back, and not broken… so I’m in a moon boot for the foreseeable and was in agony with it…. Then on Wednesday it clicked again and I can move it now- so it was obviously still subluxed and is back in joint now!

So that scuppered my plans to start standing again this week! And we’ve had to do emergency steroid injections and increase my dose again to cover the pain and stress on my body.

Wednesday was also my first time back in school, which the same class I was with a year ago- which is lovely!

It’s lush to be back and really made my week!

Now I’m out at open mic night chilling…. Without my surgeries this wouldn’t have been possible!

Love & hugs,
Mel

We still really need your help with fundraising to pay off the debt, so any fundraisers would be an amazing weight lifted off my shoulders!

I have a holiday voucher raffles up, only £2.50 to win a Voucher for £50 off a variety of holidays and trips away- national holidays, just go Hollidays and omega breaks…… you choose what to spend it on and it’s valid until the 23rd December 2027!!

https://www.paypal.com/pool/9lTkL3YymI?sr=ancr

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

05/06/2026

🎯45%-£42,054 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

Just wanted to share this weeks happiness is courtesy of my nephew Koa, giving out all the smiles today for his Aunty Mel and Nanny.

Without my surgeries this wouldn’t have been possible!

Isn’t he adorable!

M**s recovering after her pacemaker surgery but is still unwell with her heart at the moment though so hopefully it all settles soon.

I’m riding out another of my 2weekly reactions with angioodeoma and asthma flares but I think I’m over the worst of it now… baby cuddles are the best medicine (if only eh)!

Love & hugs,
Mel

We still really need your help with fundraising to pay off the debt, so any fundraisers would be an amazing weight lifted off my shoulders!

I have a holiday voucher raffles up, only £2.50 to win a Voucher for £50 off a variety of holidays and trips away- national holidays, just go Hollidays and omega breaks…… you choose what to spend it on and it’s valid until the 23rd December 2027!!

https://www.paypal.com/pool/9lTkL3YymI?sr=ancr

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

03/06/2026

PLEASE SHARE
Personal Care Assistant (Full-Time)

💷 £18.40 per hour
🕒 36 hours per week
📅 Rolling 4-week rota

Following successful completion of training and probation period, we are offering a permanent 36-hour contract - to be on a rolling 4-week rota (see example rota for once a full stable team are established).

If you're a quick learner with plenty of energy, a positive and bubbly personality, and can confidently use your own initiative while following my instructions, I'd love to hear from you!

Essential Requirements
✅ Driver – You must be confident driving my adapted automatic Mercedes Sprinter van.
✅ Non-smoker – No perfume, aftershave, or scented products can be worn while on shift due to a life-threatening allergy.
✅ Female Personal Assistant – With a minimum of one year's experience providing physical hands on care.

About Me
I’m Mel, a vibrant 36-year-old student teacher, currently studying the second year of a part-time PGCE in Primary Education, after previously graduating with a degree in Biology.
I'm recruiting the final two full-time Personal Assistants to complete my fantastic care team.
I'm looking for someone who can support me on my exciting journey towards becoming a primary school teacher while helping me maintain an active, independent, and meaningful life despite my complex health conditions.
You will be required to assist me physically, but not be my voice or my brain. I remain actively involved in directing all of my own care, studies, and managing my home, placements and daily life.

About the Role
No two days are the same!
This role offers the opportunity to learn new skills, take part in exciting adventures, and hopefully share plenty of laughter along the way.
Your responsibilities will include:
* Providing personal and complex medical care
* Preparing nutritious meals suitable for my many allergies and intolerances
* Supporting daily essential physiotherapy routines and mobility needs
* Assisting discretely during school placements and daily activities
* Supporting me to be able to have an active social life: including trips to the cinema, theatre, live music events, restaurants, and regular nights out in Newcastle
* Enabling me to partake in my hobbies, including my love of nature: walks with my family pet/future service dog (must be comfortable around dogs as I’m getting a medical alert dog in the near future), stargazing late at night, dolphin spotting during nice weather, crafting, baking and spending time with my family
* Promoting independence while providing discreet support when required
* Being able to use your initiative to complete tasks on your own when I’m unwell/in bed

You will work both independently during lone-working shifts and as part of a close-knit team of five dedicated Personal Assistants providing 24-hour, one-to-one support.

Physical Requirements
Applicants must be physically able to:
* Push a manual wheelchair
* Assist with fastening braces tightly and using slide sheets safely
* Get up and down from the floor when required
* Support with daily physiotherapy exercises
* Safely operate wheelchair clamps and transport me into my van and to my destination safely and carefully

I live independently in my bungalow in Cramlington, Northumberland.
Part of the role involves accompanying me during school placements, where you will remain nearby and provide discreet support should any care or medical needs arise.
The ideal candidate will fit seamlessly into my routines, respect my independence and choices, and provide reliable support both at home and in the community.

Important Health & Safety Requirements
Due to severe asthma, allergies, and fragile skin, the following are non-negotiable:
* No smoking
* No perfume, aftershave, or scented products
* No long or false nails
* No rings, watches, or hand jewellery while on shift
Contract Details
Location: Cramlington, Northumberland
Pay: £18.40 per hour
Hours: 36 hours per week
Contract: Rolling 4-week rota
The role includes a mixture of:
* 12-hour day shifts (08:00–20:00)
* 12-hour waking night shifts (20:00–08:00)
* Regular weekend working
* Approximately one long weekend off per month

Example Shift Pattern
Position One – 36 Hours Per Week
Week 1
* Tuesday Night Shift (20:00–08:00)
* Wednesday Night Shift (20:00–08:00)
* Saturday Day Shift (08:00–20:00)
Week 2
* Monday Day Shift (08:00–20:00)
* Tuesday Day Shift (08:00–20:00)
* Saturday Night Shift (20:00–08:00)
Week 3
* Thursday Night Shift (20:00–08:00)
* Friday Night Shift (20:00–08:00)
* Sunday Day Shift (08:00–20:00)
Week 4
* Monday Night Shift (20:00–08:00)
* Wednesday Day Shift (08:00–20:00)
* Thursday Day Shift (08:00–20:00)

If you're looking for a rewarding role where you can make a genuine difference, learn new skills, support an ambitious future teacher, and become part of a fantastic team, I'd love to hear from you.
I can't wait to meet you! 🌟

Email a full CV (including dates of employment) with a little about why this job is suited for you, to [email protected]

Or apply via: https://app.ukcil.com/home/account/67ddf70c/vacancies/personal-care-assistant-18-40-p-h-36-hours-p-w-rolling-4-week-r-cramlington-ne23-0

01/06/2026

🎯45%-£42,054 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

Hope you’re all enjoying the sunshine and school holidays!

I managed to get out again at the weekend for a night watching live music… and watching the payday weekend antics in the Toon… always entertaining!

Thanks to the people who stopped me to put money in the donation jar on my chair!

My mum had her pacemaker surgery Friday so she’s at her flat recovering, while I’m at the bungalow with the girls.

Yesterday I went and got the plants I needed for my hanging baskets and a speed bump in the carpark almost took me out!

Those things are the enemy to me and my ribs, so after that I had a huge pain and reaction, so I was too sore when we got home to do anything …..so that was this afternoons job instead, making 4 hanging baskets for my garden.

Love & hugs,
Mel

We still really need your help with fundraising to pay off the debt, so any fundraisers would be an amazing weight lifted off my shoulders!

I have a holiday voucher raffles up, only £2.50 to win a Voucher for £50 off a variety of holidays and trips away- national holidays, just go Hollidays and omega breaks…… you choose what to spend it on and it’s valid until the 23rd December 2027!!

https://www.paypal.com/pool/9lTkL3YymI?sr=ancr

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

27/05/2026

Finally giving out Xmas gifts- better late than never!!

🎯44%-£41,768 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

Today I had a lovely afternoon in the sunshine meeting up with my cousin and my honorary “niece and nephew”… Aunty Melly still had their Christmas presents to give them… which was very exciting! I saved them until we were leaving and it went from “noooo” to “ooooh yes I like presents!” 🫣😂

Fran ran up to me after having not seen them since before my surgeries, and says “aunty Melly, aunty Melly I really love you” … climbed on my lap and we had a lovely little time playing I spy & feeding the ducks! She’s getting curious now as to “why I’m in a wheelchair,” and “what’s hurting me” and thinks I need to take more calpol- which, I must admit I’m inclined to agree with! Haha!

Jaspers grown so much since I last saw them and is racing about full of smiles bless him!

So a fun day was had by all- these are the days I missed when I was laid up in bed!

Love & hugs,
Mel

We still really need your help with fundraising to pay off the debt, so any fundraisers would be an amazing weight lifted off my shoulders!

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

26/05/2026

Wins of the week so far!

🎯44%-£41,768 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

This weeks wins so far are that I had my first night “out out” since my birthday in September! And my skin has finally healed so I was able to have my first proper shower in 9months!!!! CRAZY amount of time especially since I only had one in between surgeries as my skin was only just healed!

Bed baths just don’t cut it for that long! I’ve missed my shower…… tunes on full blast, loads of bubbles, singing in the shower - and the hot water etc helps my rib pain so much too! Lush… hoping for a good night sleep tonight and a fun filled afternoon tomorrow hopefully! 😉

Managed to dislocate my metatarsals on my right foot again though so gotta put standing on hold AGAIN - was planning to try it again this week!

But, “body says no…” well, hopefully just “not yet” rather than “NO”

Hope you’re all coping in this heat! Phewwww it’s warm, I’ve been hiding in my bungalow with the fan on full blast doing lesson plans and assignments for uni.

Love & hugs,
Mel

We still really need your help with fundraising to pay off the debt, so any fundraisers would be an amazing weight lifted off my shoulders!

I have a holiday voucher raffles up, only £2.50 to win a Voucher for £50 off a variety of holidays and trips away- national holidays, just go Hollidays and omega breaks…… you choose what to spend it on and it’s valid until the 23rd December 2027!!

https://www.paypal.com/pool/9lTkL3YymI?sr=ancr

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

14/05/2026

Happiness is.… being an Aunty!

🎯44%-£41,647 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

When I found out my sister was expecting again I was very unwell, and unsure if I'd be able to meet and hold the new baby
when it arrived… however thanks to all the support and to those who kindly loaned me money (which urgently needs raised to pay back 😭) that worry was just that… a worry not the reality!

Being an Aunty is the best job! Everyone knows how much I adore my niece Katiya, who’s now a teenager and not a fan of photos!

I’m an honoury Aunty Melly, to Fran and Jasper too, which is something I’ve missed the last 6months whilst I’ve been too poorly for our regular play dates.

But being around and present from day one, for my nephew is something I’m really grateful to be able to do!

Hugs, Mel

I have a holiday voucher raffles up, only £2.50 to win a Voucher for £50 off a variety of holidays and trips away- national holidays, just go Hollidays and omega breaks…… you choose what to spend it on and it’s valid until the 23rd December 2027!!

https://www.paypal.com/pool/9lTkL3YymI?sr=ancr

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Mel x

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

11/05/2026

A trip to London, because, after all life is for living!

🎯44%-£41,647 raised of
£94K goal - (£25K for 2025 Surgery debt, £69K for rib fusion surgery, in 2026 due to the added complications and hospital stay- see breakdown am quoted on GoFundMe)

Hi!
Last weekend I had a fare trip away! A weekend in London to see Olivia Dean and Hercules the musical.

It was lovely but I was exhausted after- hence the silence!

It was amazing though! Such a lovely couple of nights! I even managed to meet up with my friends and fellow EDS CCI fusion buddy Sarah, who I've not seen in person for YEARS! So lovely to be able to catch up!

Now I'm back on track working on uni work and enjoying some live music when I can.

Things I've missed soooo much over the last 6months!

We still really need your help with fundraising to pay off the debt, so any fundraisers would be an amazing weight lifted off my shoulders!

I have a holiday voucher raffles up, only £2.50 to win a Voucher for £50 off a variety of holidays and trips away- national holidays, just go Hollidays and omega breaks…… you choose what to spend it on and it’s valid until the 23rd December 2027!!

https://www.paypal.com/pool/9lTkL3YymI?sr=ancr

I’ve also started another £200 Amazon Voucher, for the winner to choose if they want the voucher in pounds for the UK or dollars.
£5 Entry: https://www.paypal.com/pool/9oKwUfaY0w?sr=accr

Thanks so much for saving my life and making all of this possible!
I’m grateful every day, to be able to do the things I love, and I’m SO looking forward to getting back into living life properly!

To my nights watching live music, Aunty duties, and to get into school on placement!

Watch this space! And please, if you can, enter my raffles or consider hosting a fundraiser! Every little adds up.

Thank you!

Mel x

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

Alternative ways to donate:
💜 https://gofund.me/b6fe4799
💜https://www.melanies-mission-eds.org.uk/donate-now/
PayPal:
💜 https://www.paypal.com/pool/9hg3NBUuDn?sr=wccr
💜Or to [email protected] via PayPal friends and family!

Address

Cramlington
NE23

Website

http://www.melanies-mission-eds.org.uk/donate-now/

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