Hi guys, I helped start this page as I have known Vicky for some years, I knew her before this terrible illness came along, its strange as I have seen so many people in the past that its all in her head, to stop putting it on and well so many cruel things I lost count to be honest
I’ve seen a ball on energy that just like the rest of us was dealing with life the best she could, slowly get worse and worse, it started with minor annoyances and a few visits to the hospital to be told there was odd things wrong
I went round to Vicky’s for a Christmas day a few years back, Vicky was doing Dinner for a lot of friends that either couldn’t afford it or were simply alone at Christmas, It was great as she is a great cook
I have many photos from many events, but I feel this is not the place for them, as I’m trying to put across that Vicki is just a normal lady trying her best to bring up Dommy and be a loving wife to Mark. and a good friend to a lot of people
All Vicki wants to to be Vicky again, not wonder woman or some special person, she just wants a normal life just like the rest of us
If you look down the posts on here you will see there is a few links to help vicky find her way, and of course they ask for money and I realise a lot of people will be saying to themselves its a scam as when she smiles and puts a happy face on she can look great
But i’m sorry to say its not, so if you would like to help vicky, even if its just a few quid it will all help, use one of the links
I will follow this whole story as it unfolds, so you can all see where the money goes and the results that hopefully will just give vicky back her life
There are so many pictures that could be used to show you just how bad it is, but I think you all also need to see the nice ones too as its so easy to see that someone are pulling the strings, but I can assure you
This is the Vicky I know, she cares more for others than herself, she will be there for you in your darkest hours
anyway that’s enough on here, all I will say is I pray this sort of thing never happens to anyone you know as watching it is the hardest thing I know
Vicki and Mark are fundraising for her so that she can hopefully get to the USA for an operation for her jackhammer oesophagus. She is tube fed permanently and has been told she will suffer for her entire life and will never eat again. Every penny counts. And the support that has been recieved has already been amazing. But now some fantastic, kind people have started donating home made and other items to raffle off to raise more funds. So we really hope that you see something you like. Tickets will always be a great deal for everyone and most of the prizes will be one offs. Also postage will always be free.
For anybody that doesn’t wish to get any tickets, would you please at least read the links posted so that you can understand the condition and share any fundraisers. We hope you enjoy this group… And good luck everyone!
Payments for raffle tickets may be sent by PayPal to the following account… https://www.paypal.me/Vickiweller
To ready up on vickis condition, here is the link to follow her progress. Also linked is the Go fund me page for her campaign.
Good luck everyone. And please don’t be afraid to ask questions x
Amazing write up. I’m so happy with it. I’ll be sending out copies to all that asked. There’s more pics on the echo website than there are in the paper…. here’s the link to the article xx
A BRAVE woman has revealed her battle against a debilitating condition which has left her unable to eat or drink ever again.
Victoria Weller has not eaten properly for years and instead is forced to rely on a tube in her stomach for nutrition and hydration as well as a cocktail of medication including morphine every four hours and anti-sickness because she vomits at least twice a day.
Now the 33-year-old wants to share her harrowing story to raise awareness of the rare condition jackhammer oesophagus as well as fundraiser for a £40k procedure in America which could enable her to eat again.
The condition, which leaves her in constant discomfort including spasms as severe as a heart attack, has caused her to lose her teeth, her hair, suffer arthritis, insomnia and at one point weigh in at just five and a half stone.
Victoria, who could not even eat on her wedding day in March after nibbling a sandwich in February left her hospitalised, said: “Doctors have told me there is nothing they can do. I feel like the NHS has given up on me. The PEG tube is permanent and I am never going to eat again.
“This is my life and I feel like it’s over already.
“The pain is so intense at times I can’t cope with it. I feel like I am dying.”
Ten years ago Victoria, from Southbourne, began suffering health problems when she was vomiting every time she ate before suffering a sickness bug for six months.
Doctors diagnosed a hiatus hernia however despite an operation, her condition got worse.
She said: “I couldn’t eat anything and I was in absolute agony all day every day.”
Baffled medics then told Victoria she had an eating disorder and she was even sent to St Ann’s Hospital as an outpatient.
“The psychiatrist stepped in and said ‘no.’ I wanted to eat, I just couldn’t keep anything down. I was in A&E every other day, I couldn’t breathe, I was sweating profusely.
“I knew then it was a serious problem. I was sent home from A&E eight times but I collapsed and it was then I was admitted to Royal Bournemouth Hospital for a month.
“I had a feeding tube fitted through my nose, down my throat and into my stomach for a year so I could be quickly pumped with fluid and food as I was in and out of consciousness.”
Following extensive tests, invasive procedures and more surgery, Victoria was diagnosed with jackhammer oesophagus, also known as hypercontractile oesophagus.
“It means anything I swallow gets to a certain point and bounces until I bring it back up,” she explained.
“It causes my oesophagus to spasm, causing intense chest pain which is identical to a heart attack.
“It feels like I can’t breathe, I feel like my chest is going to explode. It’s just horrible. The spasms can last as long as a month.
“It has now reached a point where that is brought on from standing up too quickly, sneezing, coughing, hiccuping, laughing, even just sipping a drink. I’m on a ridiculous amount of pain relief including morphine.
“My immune system is so low I have alopecia and have lost my hair. My teeth are falling out because I don’t eat and don’t drink so they are incredibly brittle and I have arthritis.
“I am in and out of hospital with regular infections and I constantly feel sick. I’m tired all the time.”
The condition also affects Victoria’s social life.
She explained: “I’ve always been a big eater. I used to love food. When I first met my husband Mark, I’m the type of girl who couldn’t decide between a McDonald’s or a KFC so I’d have both. I have never counted calories.
“Now I don’t get invited for meals because people feel bad for eating in front of me. Besides, it’s also really difficult taking my feeding machine, spare meds, morphine and kit to ensure everything is sterile.”
However there is hope. Victoria has researched surgery, a heller myotomy where the muscles in the oesophagus are cut to allow food and liquids to pass to the stomach.
In one case the patient went from eating nothing for years to eating the next day.
“We have researched and researched but haven’t found anyone else with this particular condition so I’d be really interested in hearing from anyone who also has it.
“My condition has got so bad they don’t think a normal heller myotomy will work. I’d need a sleeve as well because my oesophagus has scarring from all the bile I bring up.
“The operation has a 50 per cent success rate but is our last option before we lose all hope. It isn’t going to make it worse. I’ll either be able to eat again or I won’t.
“Even if I can’t eat properly, even to be able to taste would be amazing. I feel like I’m one of the only people on the planet who will never taste food again.
“I’m not asking for anything special. I just want to be normal.”
To support Victoria go to gofundme.com/please-help-vicki-get-the-op
By Tara Russell 12-11-2017
Aw I feel so blessed tonight. Mark has run me a lovely hot bubble bath. But before I get in, Levi offered to shave my head because my patches are looking awful!!! Nothing like a pampering when you feel as rough as I do right now… Hence why I look so bad in the pics…. But im not moaning! ☺
I know its nothing to do with the jackhammer oesophagus
But I thought it would be interesting for other alopecia sufferers
Will do more of a write up when I can
Please keep sharing our story and the links to our videos and go fund me the posts are being shared by the minute which is amazing!!
But guess what… STILL SMILING!!! ☺
— feeling pained.
I am very lucky to have such a great family and friends
What can I say about my Vickys gofundme, in her words
“Im just a normal person and I hate asking anyone for anything from anyone”
I have know Vicky for a long time no, the picture is of her birthday, at this time she had been suffering some time with Alopecia and something we didnt understand which now turns out to be the Jackhammer oesophagus
Vicky spent 99% of her birthday dinner in the toilet being sick
I just cant find words to explain it all, I know their are millions of people out there with life threatening illnesses , more each day and I can understand the carers, family and friends of these people feelings
I think she hit it on the handle when she said ” I just want to feel well” she knows life is never again going to be easy, but she just wants a life back
Me (Neil) and Vicky
If we are realistic, the operation will cost more than the £30,000 that we are aiming for. But we didn’t want to seem like we were asking too much to go higher…. So if we can get over £30,000 that would be absolutely fantastic…. All we can do is try