Melanie's Mission To Live- Ehlers-Danlos Syndrome

Home
United Kingdom
Cramlington
Melanie's Mission To Live- Ehlers-Danlos Syndrome

Directions Website Contact the organisation

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/

26/10/2026

🎯47% £44,218 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 quoted on GoFundMe)

Home and recovering.

There's not much to say this week- I got discharged home on Tuesday night and have basically been sleeping and resting since. Needing lots of nebulisers as my chest is still not right. Even rolling in bed was triggering asthma flares. So there's been no trips out, live music, stargazing or cinema trips… just bed!

Poppy was very pleased to see me and very concerned sniffing my mouth everytime I cough, bless her!

However I've managed to do my second BSL exam, and I got out of bed today to see my nephew for an hour which was lush as I've not seen him for 6weeks (since my birthday!).

Today I discovered he'd forgotten who I was, but then threw himself into my hands after a little playtime… and singing (who can resist Aunty Mels terribly bad singing due to my chest!), he also loves joyriding on my lap now too - look at those grins!!

It's been a rough couple of months but I'm hoping I'm on the mend now ready for school placement on Monday.

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 can't afford to pay for a private script for antihistamine injections as I'm having severe angioedema where my throat swells up and I need injected antihistamines as the oral aren't absorbed fast enough due to my gastroparesis, but the consultation alone is £350 plus £250 for the injection scripts! It's just too expensive, so I'm trying desperately to find a better alrernative. Being unwell and complex is so expensive!!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜

£5/entry via:
https://www.paypal.com/pool/9rk71aWcw3?sr=accr

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

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!

16/10/2026

🎯47% £43,882 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 quoted on GoFundMe)

In hospital again…. I had a good run without admission but this chest infection has wreaked havock. After a week of IV antibiotics once daily at home, I still wasn't fully better but hospital were reluctant to prescribe more.

Long story short and many calls to 111, refused ambulances, trips to the GP, out of hours visit, and I finally let them send me via ambulance.

I was sent home again the next morning (I was told “A&E is for dying people and they're there to save lives and what did I hope to achieve from going there”) .

Another check in with my GP on Monday after getting worse again, she spoke to the hospital and they still wouldn't treat the infection, but by Wednesday I was finally admitted under a lovely team who are looking after me well.

They found 2bugs and crackles in both lung bases, unfortunately the only antibiotics suitable this time are IV ones again- but 3x daily and I'm not well enough to come back and forth 3x just yet… I'm needing to be in bed as I'm dizzy and have slightly low oxygen levels.

So I started the antibiotics on Wednesday night, and I'm waiting for a chest CT. I'll be on them a week and were slowly weaning steroids & waiting for it to clear FULLY this time.. To get me back on track again!

I hate being stuck in hospital as everything adapted for me at my lovely bungalow, I can't eat the food here due to allergies/intolerances, I get no sleep and the bed is no good for my ribs- I have a special super firm mattress at home…. And who

Never mind, I'm very grateful to be getting treatment now, and be in the road to recovery. I just need to sleep now as I've had no sleep for days!

I have a mountain of uni work to do and a load of other fun things I'd planned, but it will all still be waiting for me next week when I can kick this infection and be back on track.

I had a little face time with my nephew today as I've not seen him for a few weeks with being poorly! - I got a little smile and a slobbery face time kiss 🥰

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 just had to pay for a private script for antihistamine injections as I'm having severe angioedema where my throat swells up and I need injected antihistamines as the oral aren't absorbed fast enough due to my gastroparesis. Being unwell and complex is so expensive!!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜

£5/entry via:
https://www.paypal.com/pool/9rk71aWcw3?sr=accr

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

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!

30/09/2026

🎯47% £43,882 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 quoted on GoFundMe)

It’s been a while since I updated… which those who know me well know, is never a great sign!

I like to keep posts positive and upbeat so don’t like to post when I’m unwell 🙈😂

However, I had my Birthday, was poorly for it and had to go home to bed. Then I’ve basically been unwell the whole time since!

This is me today at hospital on nebulisers, IV antibiotics and antihistamines, trying, to get some work done!

This stubborn chest infection won’t go away, I’ve had oral and then liquid oral antibiotics too, and now I’m at hospital having IV antibiotics.

Poppy as always knows when I’m unwell and is extra cuddly sniffing around my nose and mouth and neck- bless her!

Thankfully they’re sending me home and I just have to have once daily IV antibiotics from home which is much better and means I can try and rest and get better ASAP!

My asthma and angioodeoma has been much worse as a result of the infection and my adrenals have been misbehaving due to the infection too. Obviously the coughing has caused my ribs to be much worse too.

I paid for that private appointment with a respiratory consultant in London who prescribes antihistamine injections as they work so well with my angioodeoma and breathing issues and made a few recommendations- but they’re so expensive to fund the appointments and the prescriptions! So I’m trying to find a longer term solutions.

I’ve been to school and I am thoroughly enjoying placement, gutted to now be off poorly… but hoping to use the opportunity when well enough get my assignments done and be all ready to go once I’m well enough to be back in school!

We managed to rig up a way to use my laptop and projector from bed to watch lectures but I can’t type on a keyboard that way- so I’m waiting for a new assessment to be able to get some new equipment to enable to to use the laptop fully while flat on my back in bed resting my ribs.

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 just had to pay for a private script for antihistamine injections as I'm having severe angioedema where my throat swells up and I need injected antihistamines as the oral aren't absorbed fast enough due to my gastroparesis. Being unwell and complex is so expensive!!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜 £5/entry

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

Thank you!

Love and hugs
Mel x

#𝐌𝐞𝐥𝐚𝐧𝐢𝐞𝐬𝐌𝐢𝐬𝐬𝐢𝐨𝐧𝐓𝐨𝐋𝐢𝐯𝐞💜

07/09/2026

🎯46%-£43,597 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 quoted on GoFundMe)

🎁It's my Birthday!! 🎁
What a year it's been!

I've set up a birthday PayPal pool if anyone wishes to donate to my fund. https://www.paypal.com/pool/9rWWx9CtCr?sr=ancr

I attempted a night out on Saturday night but was very unwell and had to come home after nebulisers and emergency injections - so that was a shame!

Then yesterday I was spent in bed poorly! 😥

Never mind… today's my birthday and I've spent the entire day sorting out medical appointments and prescriptions as I my chest infection has returned.

Having a couple of hours out tonight for my birthday, powered by steroids, antibiotics, antihistamines, steroids and nebulisers!

I did have a lovely visit from my nephew today too, we had a sing song and played with bubbles- which is also great chest physio for me!

I'm hoping to be feeling better for school placement restarting on Monday! I've missed it so much… can't wait, so I need to be better!

My ribs are so bad at the moment but I'm really hoping we get them sorted over the next year and I can really get back to fully living life again!

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 just had to pay for a private script for antihistamine injections as I'm having severe angioedema where my throat swells up and I need injected antihistamines as the oral aren't absorbed fast enough due to my gastroparesis. Being unwell and complex is so expensive!!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜

£5/entry via:
https://www.paypal.com/pool/9rk71aWcw3?sr=accr

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

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!

04/09/2026

🎯46%-£43,497 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 quoted on GoFundMe)

It's my birthday on Monday, 37!! Jeez, crazy to think I've made it this far! What a rollercoaster it's been the last few (many 🙈) years!

I'm still not too well at all, I went to Kynren to see the new daytime park shows and it was amazing, heading back for the evening show soon but I went into adrenal crisis and had to take my emergency injection and leave early which was a shame!

I've since had an asthma/mast cell flare and think my chest infection may still be lingering triggering it all. So I'm waiting for advice about antibiotics and back on more steroids while we await the results.

My birthdays Monday so I'm hoping to get out tomorow to celebrate.

I had a private appointment today with a specialist who's hoping to make some recommendations to help with my asthma and reactions - which in turn would help with everything!

Every cough or movement is popping my right side ribs, it's really difficult. So hopefully we get a plan in place soon.

In the meantime I have a couple of weeks to crack on with my assignment for uni before my placement begins again at school- I can't wait!

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!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜

£5/entry via:
https://www.paypal.com/pool/9rk71aWcw3?sr=accr

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

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!

23/08/2026

New job ad, I’m looking for the last member of my fantastic care team!

It’s for a 24hr contract- Friday Dayshift and Sunday waking nightshifts - training/probationary shifts will be different days, due to my other commitments.

See advert to apply, please share :)

23/08/2026

🎯46%-£43,351 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 quoted on GoFundMe)

I’ve had a lovely week with Poppy - I’ve been Poppy sitting while my mum has a holiday!

I also had a second trip to see a UK rib surgeon who’s looking at my ribs and hoping to consult with my surgeons to make a plan of action.

A night out in town, a trip to the theatre to see Berlesque, to the beach to get Poppy an ice cream of course! - missed seeing the dolphins by 5mins (tricky to spot this year!! … And a visit to the cinema.

My ribs are so painful and dislocating since this recent chest infection! So I’m struggling a bit with that and my asthma/ allergy flares make it so much worse- but I have a private appointment in couple of weeks to see if there’s anymore can be done to help my mast cell and angioodeoma flares!

It’s my birthday in two weeks, then back to school! So time to get really stuck into placements and teaching!

… but I’m squeezing in some fun along the way with a trip to Kynren to revisit the primary history syllabus over the next few weeks… and a fishing trip next weekend- I’m desperate to see the dolphins again so hoping they’re around when we’re out at sea! Cross your fingers for no rain… and most importantly dolphins!!

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!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜

£5/entry via:
https://www.paypal.com/pool/9rk71aWcw3?sr=accr

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

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!

13/08/2026

🎯46%-£43,329 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 quoted on GoFundMe)

PROGRESS AT LAST!!

I’m finally starting to recover from the chest infection I’ve had for wayyyy over a month. It’s caused nasty mast cell and asthma flares and so I’m having a terrible time with my rib instability and constant dislocations….. so this summer has been spent similar to last summer- in bed with dislocating ribs!

👏🏻But, I passed my first BSL exam with full marks!

🌒I managed to get out to see the eclipse and the peak of the Perseid meteor shower!

☄️It was incredible!!

We made a pinhole projector, watched the eclipse in the garden and then after a shower and a rest, headed out at midnight!

I went to a dark spot where it was really quiet with very little light- literally shooting stars everywhere! Like natures fireworks… I even saw a pink one for the first time!

I didn’t manage to get any photos or videos of them though! But sometimes, you’ve just gotta be fully immersed in the moment and take it all in, rather than through a phone screen… but if I’m honest I’m gutted I didn’t get any videos, to look back on and remember! - Maybe next year!

In medical news, I have a second appointment next week about my ribs with my new thoracic surgeon in the UK… hoping it goes well and we can create a plan.

And I’ve had to organise a private appointment in a few weeks time to try and get some advise and support to get these angioodeoma flares under control as they affect my breathing and it’s a real issue - even more so recently with my chest infection and rib problems.

So the next mission is to recover properly, get a plan for my ribs, get these reactions under control, complete as much uni work as possible and get back on track for September!

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!

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.

HOLIDAY break in beautiful Belford- RAFFLE🎟️

ENTRY: via PayPal link in comments 💜

£5/entry via:
https://www.paypal.com/pool/9rk71aWcw3?sr=accr

PRIZE:
A 3-night weekend or 4-night mid-week break in the gorgeous Well House Hayloft in Belford, Northumberland.

(To be taken between November 2026 & the end of March 2027 subject to availability - & excluding Christmas & New Year).

A beautiful 1 bedroomed apartment situated above a coffee shop.

Has both a king size & single bed, plus a well equipped kitchen dining/ sitting room. See pics & links for more!

Situated 5 miles from Bamburgh & 12 miles from holy island. 14 miles north & south to Berwick & Alnwick. (No pets allowed)

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!

Address

Cramlington
NE23

Website

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

Alerts

Be the first to know and let us send you an email when Melanie's Mission To Live- Ehlers-Danlos Syndrome posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.