News

Fop action t-shirts

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Thank you to David and Becky at Bronco who got in touch with Alex at Indigo Clothing who donated ten fop action t-shirts.
These t-shirts will be brilliant for fund raising events so if anyone would like to order some please get in touch via the contact section on the homepage of our fopaction website.
T-shirts are £5 each(ex vat)and delivery and come in S,M,L and XL.

Thanks for the Support

The last couple of months have really been an amazing journey and we have managed to get the FOP Action website up and running so that we can raise the awareness of FOP and seek even more donations.

There have been many people involved with getting to where we are now and we’d especially like to thank Dave and Becky from Bronco for their kind donation of this fantastic site. Having the new website means that we can add News and Information to it whenever we like, so that we can keep the FOP families up to date, as well as having a way that people can donate to FOP.

Due to Bronco’s involvement in the website build we have also received a kind donation of a set of t-shirts with the new FOP logo on from Indigo Clothing who specialise in t-shirt printing. The new t-shirts will help us to promote the website while we are holding fund raising events which is brilliant. We are also receiving lots of support from various people on the internet who are helping to promote the site and all of this really helps to raise awareness.

About Seanie

September 3rd 2008 was the worst day of our lives. Seanie was diagnosed with FOP. This was after numerous hospital admissions and various treatments for the swellings.

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Around the middle of June Seanie was on the trampoline at school when she had a minor accident her knuckle went into her Strawberry birth mark, but on inspection I couldn’t see anything. A couple of weeks later she was complaining her back was hurting her and when I looked at her back there was a large lump there. I took her to our local hospital and they just said she had probably ruptured some vessels in the birth mark and it would settle down. We went home but the lump got more painful and larger so I took her to another hospital where they took it more serious and said the fluid could become infected so they put her on an IV drip. To cut a long story short she had MRI scans blood tests but nothing really showed up until the very last scan in September and that was when they called me back to the hospital and asked that dreaded question what were her big toes like.

From that moment on our life changed. When they tried to explain what the condition was they couldn’t go into detail as they were not experts and said they would refer us to Great Ormond Street Hospital. When I got home I went on the internet and what I read made me feel physically sick with shock. It was described as the worst genetic condition on the planet.

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I couldn’t wait to see somebody at Great Ormond Street I had to find someone straight away that can tell me it’s not as bad as the internet says.

I found Professor Paul Wordsworth who has been our lifesaver and has given us so much hope. We finished with Great Ormond Street in January as I didn’t agree with their excessive use of Steroids and Seanie is still being tapered off them now after being on them for 11 months solid.

Seanie still attends school mainstream school and luckily enough I work there so can keep an eye on her on her bad days. Her teachers let her leave lessons 5 minutes early to avoid the rush, but knocks and bangs do happen, we cannot wrap her up in cotton wool she has to live every day to the max and do what she wants to do.
Seanie has bad days but thank god not too many of them. Sometimes she gets frustrated when she cannot do something as her neck, shoulders and arms are locked but thankfully her hips and legs have not been affected. She has had continuous flare ups since last June lumps come up spread out and go down. She did have a swelling around her neck and on the floor of her mouth last year but she was on the steroids at the time and it just went down. She has a couple of little bone growths on her back but nothing too noticeable.

Seanie loves hanging out with her mates and four of them have just gone off to the pictures as I type this out. She’s into make up, clothes , music everything a 13 year old loves, plus she is a brilliant cook and makes the best seafood risotto ever.
Seanie must find it frustrating as up until last year she was totally healthy living a normal life and our aim as a family is to make it as normal now as it was the and let her do what she wants to do (within reason of course).

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As we all do she has her down days but more up ones that down ones, and she is never down for long, she is a totally amazing person with a brilliant sense of humour that can have you crying with laughter at some of the things she comes out with.
As a family we are focusing on raising awareness and funds for Oxford University where they are doing an immense amount of research into FOP. That is why we went public we knew what the headlines would be like “Girl Turns to Stone/Statue” etc., we were aware that the story would be sensationalised to obviously get people interested in and talking about FOP and this we achieved. We also appeared on London Tonight, the main 6.30pm News and the This Morning programme with Fern Cotton and Philip Scholfield.

We met Bruce Grobbler that day as he was on the programme after walking out of a reality TV Programme the previous night and he was so interested in Seanie’s condition and story that he rang a contact he knew at the large children’s charity called SPARKS and he was trying to organise them into donating to Oxford University FOP research fund and from what I can gather the wheels are in motion on this which is brilliant. So far these last couple of months with various fundraisers we have sent Oxford nearly £7000 plus they have received outside donations because of the media coverage. Plus there are several other friends/family doing marathons and other fundraisers over the next few months. I want to send a brochure (Frewyeni at Oxford is working on it) to every school in our borough which is the Royal Borough of Kensington & Chelsea and ask that they do just one fundraiser to help raise money for research at Oxford, so lots going on. I am constantly thinking of things we can do or people we can contact to raise money.

This is my ultimate scenario, one day there will be tablet that stops bone growth which in turn means that Seanie and everyone affected with FOP can be operated on and the excess bone taken away and they will get movement back. Every morning on the news there are unbelievable breakthroughs in the field of Genetics and without a shadow of doubt there will be a breakthrough with FOP.

In the News

Daily Mail
Daily Telegraph
Metro
The Sun

Fundraising in Hartlepool

We had a fundraiser event, here are some photos.
Thanks to everyone who took part and everyone who helped organise the event, we had a lovely day.We had a table top sale, tombola and raffle at the Hartlepool Workingmans Club and we also had a walk with the children up to Hart village.DSCF0158
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Fundraising with Dinner Parties

Around the World FOP Dinner Party 2006.

Fopers around the world were having dinner parties on the same night to raise money for FOP. Rachel and her friends dressed up as doctors and nurses, Ross, Rachel’s brother and his band played and we all had potato pie supper.

Rachel with her family and the band

Rachels friends dressed as doctors and nurses

Rachel and Luciana

Pina Lucianas mum and Julie Rachels mum with Luciana

About Rachel

Rachel aged 25 from Rochdale.

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My FOP Story.
I was born a healthy baby except I looked like I had bunions on my feet.
At 19 months old a lump appeared on the back of my neck, I was sent to Manchester children’s hospital were a biopsy was taken and I was diagnosed as having Aggressive Fibromatosis.
I underwent 10 months of chemotherapy, in which time the lump on my neck grew all down one side of my back. But by the end of the 10 months on chemotherapy the lumps seemed to have disappeared.

From 2 and a half years old until 9 years I was free of lumps and led a “normal childhood”.
At 9 years old I banged my back on a swing and the lumps came up again all down my back.
I had another 3 months chemotherapy and 4 months radiotherapy.

When I was 12 years old I was diagnosed with having FOP, I was on a routine check up at the hospital and my consultant asked to see my toes, thats when they knew my bunions were the fop short toe!

I have restricted movement in my arms, neck and legs.
I moved out of my parents home in April 2008 and my fiance Paul is now my carer.
Nothing stops me going out and living life to the Max.
I have made lots of friends who also suffer with FOP and hopefully one day there will be a cure for all of us.

me and Luciana

Me, Luciana, Jasmine and Kelly

Lucy, Richard and me

me Fred and Louise at Burns night Aberdeen 2009

London Marathon Run to Raise Funds for FOP

Just wanted to say a great big thank you to Colin Stead who works at Peart Fencing, Hartlepool who ran the London Marathon on the 26th April and raised £1040 for Oxford FOP research. I also want to thank Andrew Armstrong who told Colin about Jasmine and fop.

About Jasmine

Jasmine is a 2 year old girl from Hartlepool who has FOP.

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This is a photo of me, Jasmine’s mum Kelly, Jasmine in the middle and her sister Sienna.

Jasmine was diagnosed with fop at 19 months old, she is three in October.
The first flare up Jasmine had was on her head when she was 16 months old she then had other flare ups that came and went on her head which we where told where fatty lumps after a scan at our local hospital.

At 18 months old she had a lump appearing on her neck so we had already had another appointment for a specialist we showed him the lump and he said we would need to wait for a mri scan. Over the next week this lump was getting bigger so I got another appointment. Jasmine was admitted on the ward to wait for a mri scan.

After the scan we where told that there was something making her bone grow on her skull and that it looked like a tumor on her neck. We were told to go to another hospital the next day where a biopsy would be arranged as it could be cancer. Over the next week we saw other specialists and two days before she was to have a biopsy she was diagnosed with fop.

Since then we knew every time she had a flare up a piece of bone would be left behind. Not long after she was diagnosed both her shoulders locked up and she has limited movement in her neck and back.

We have had a lot to deal with this last year but the girls have got us through it. Jasmine is brilliant she has got such a funny little character, we love her so much.

Jasmine in the News

Jasmine has been regularly featured in the Hartlepool Mail and some of the articles are below:

Jasmine’s Funds Top £20,000

Golfers raise £5,000

Poet hoping to raise cash for Jasmine

Thanks to LucianasWalk.com

We just want to say a big thankyou to Nicola Morris from Blackburn, Lancashire and to her father Keith Morris From Blackpool, Lancashire who will be both walking up the highest free standing mountain in the world Mount Kilimanjaro. This will help raise money for research and support a lovely young girl with FOP, Luciana Wulkan.
To find out more information on the walk please see www.lucianaswalk.com.

You can see more about Luciana in a documentary that was made and here is an introduction to the film.

Welcome to FOP Action

After months of hard work we have finally launched our new website with help from the guys at Bronco, who kindly donated this site to help our cause.

Help you will be able to learn more about what FOP is, read recent news and developments on the condition as well as help us by volunteering or donating to research in to a cure for FOP.

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