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.
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.
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).
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.
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