In June 2008 our then 19 month little girl was diagnosed with fop. It has been a lot to take in especially when you read the words like ‘turning to stone’ and ‘living statue’ etc…
We had never heard of Fibrodysplasia Ossificans Progressiva and to be honest it sounded like something supernatural or something you would see in a horror movie . But no ,unfortunately its real and not as scary as we first thought.
A lot has happened since she was diagnosed. At the time she was diagnosed she had a flare up on her neck which in a matter of weeks spread down her back up to the other side of her back and shoulder. She has also had flare ups on her stomach and her chest. At that time we where advised to give her a four day course of steroids for every new flare up so had a lot of steroids which really effected her mood and it did not stop fop bone from growing. So within weeks she could no longer lift her arms up at that time it was hard to clean under her arms and her back become really stiff straight away. She could no longer crawl and couldn’t get up by herself. Some people can go years from being diagnosed without any major flare ups but it wasn’t meant to be for Jasmine.
This was a very difficult time for us as fop didn’t seem to give her a break she was getting one flare up after another and she was at the age it was hard to keep her safe and she just wanted to be the same as her big sister Sienna who was only three at the time.
The next summer after her diagnosis she was still getter one flare up after another, we then had took the girls on holiday to Spain and she had a six weeks break from fop at that time. After that she would go a few weeks in between small flare ups which where mainly on her back. At the moment she has not had a flare up for six month which is fantastic. The scary thing about fop is that it is so unpredictable so she could have a major flare up tomorrow which may effect a major joint so she may loose some movement.
Jasmine is amazing. She loves life, she is always laughing and getting into mischief with her big sister Sienna. She has gone through so much and it has not seemed to bother her too much. I know she is going to start asking questions but as she is young she is growing up with it so its normal to her. She did ask the other day “when I get a big girl will I still have poorly bones”. I said “its not poorly bone its just extra bone and hopefully the doctors will get some special medicine to help”. She just smiled and said “ok mam”.
Jasmine before any flare ups.
One of Jasmines first flare ups
As a family we are feeling so much better now and have hope that a better treatment for fop will come soon. My hope is that it happens before Jasmines legs are effected so she can still be mobile. The news of Richard Simcox’s brilliant donation to Oxford FOP research was just what we needed but I wish there where a few more business men who where so generous. We are still desperate to help but there is only so much we can do. Since Jasmine was diagnosed we have raised £24,000 for research which we are really proud of.
We have had a lot to sort out in the last two years.We started having care coordination meeting with everyone involved in Jasmines care which has been really helpful. We first had them in our local hospital and then in Jasmines school where she now attends nursery school. Jasmines occupational therapist assessed her and she now has a special soft pushchair and when she was smaller she used a special potty chair. She was not comfortable in her car seat. Her OT showed us some that would benefit her and a local charity paid for it. I was really scared of Jasmine coming out of her cot into a bed incase she fell out of bed or got out and hurt herself during the night which could cause more flare ups. We went through some different options with her OT. In the end we just got a low bed with a memory foam mattress. She has been fine, she had fell out of a few times but onto bean bags so she has not hurt herself.
The biggest thing that we wanted to change is we wanted Jasmines bedroom downstairs. We wanted to change our garage into her bedroom. We spoke to her OT who advised us social services might be able to do this for her. After a lot of meetings we where told they where going to do it for us which has really helped. The stairs for Jasmine where a nightmare and life is so much easier now. She also has had a shower room built with a low sink to she can reach as she has limited movement in her arms. She still goes in the bath upstairs but she need a lot of help and as she is getting bigger its harder so the shower is fantastic.
Jasmine started nursery in January. She loves it, her aunty Margie is her one to one and we couldnt of asked for someone better. She goes to St John Vianney School and all the staff have been fantastic. It really makes me smile to see her having so much fun with her friends in such a lovely school. The school even got extra funding to pay for her aunt to be with Jasmine so she can attend the holiday club a few afternoons a week so I can spend some special time with my 5 year old daughter and do things that Jasmine cant do.
A big day for 3 year old Jasmine as she start school. Read more about it in the Hartlepool Mail
One of the best things last year was the creation of this website. I cant thank my cousin David and wife Becky enough for creating it for us and teaching myself and Julie Hopwood mum of Rachel with FOP how to work it.
Its bringing FOP sufferers and families together in the UK which is helping to raise awareness and funds for research. If anyone would like to add anything to the website about themselves or a fundraiser please get in touch. You can get in touch by sending a message through the contact section on the top of fopactions homepage.
