Ms Jenna

Thank you Tony for making me feel like I'm not fighting this battle alone ...


Get Emily Walking Since I started this site there have been many times that I have been upset with the story's that I have heard, and many have come across my desktop. It is the nature of the Beast (RSD) that most of them are horrific and are the stuff of nightmares. Since my Grandaughter Jenna developed the condition at 9 yrs old we (our family) have gone through everything that this condition can throw at us and it is for this reason that I keep this site in operation and as up to date as possible. In the hope that it might help someone else who is struck down with RSD. The worst times of course are when I hear of young one with the condition and I am sorry to say that Emily falls into that category. Please read her story as told by her Mum. To Emily however I send a ray of hope that is contained in JENNAS Story (Below)to show that this Monster CAN be beaten but that it is a commitment for the whole family to undertake.Tony

What it's like being a parent of a child with RSD/CRPS
Basically HELL

Hi my name is Tracy, my husband is Graham and we have four beautiful daughters, Philippa 14, Laura 12, Jenna 10 and Karla 4. Jenna has RSD, first in her left leg and now in both. She has been suffering since October 2000, when she was seven, years of age. A lot of water, (from crying) has since passed under the bridge.
Looking back now I have great feelings of guilt and sadness that we could have once tried to convince ourselves that Jenna was not really in as much pain as she was saying. We used to watch her every move like a hawk just to catch her out, even when she was asleep. The doctors kept telling us there was nothing that they could find wrong, or it was psychosomatic and in the end that she needed to see a psychiatrist/psychologist. Of course she needed to see someone, our daughter was seven years of age and WANTED TO DIE. What normal healthy child would want that.

Deep down I knew that what Jenna was telling us was true (and I wish now I had listened and tried to understand more), she really was in so much pain. I had to do something to help her. I was not going to wait months for an MRI scan so kept making phone calls to the doctors surgery and very often in tears. They then put their own funds forward for the scan to take place in February 2001. This was only to knock us all down again because it showed nothing really abnormal apart from thin ligaments around her knee area.
We had nowhere else to go. Jenna was now hardly attending school or if she was she was always getting sent home again. Her teacher noticed how depressed she was becoming too. My dad and I were spending most our days on the Internet just typing in "leg pain" until we found a story about a boy in the USA whose mother wrote an article for a magazine about her sons fight with RSD. All the symptoms seemed to fit.. When I told Graham it was such a relief. I felt as if a glimmer of hope was there at the end of the tunnel. I thought great, the doctors will know about this and be able to treat this awful condition.

How wrong could we get. We asked the doctor at our surgery, never heard of it. We asked at our local hospital, they had not heard of it either. Back to the internet again to find out which doctors to go to. We eventually managed to get an appointment at Great Ormond Street Hospital in April 2001. That was six months of agony for Jenna and six months of worry and heartache for us. Looking back now I think I was on the edge of a breakdown myself, but as a parent you cannot give in, you keep going somehow and having Graham and my parents nearby they kept propping me up.

At last April 2001, Jenna was diagnosed. May 2001 Jenna and I spent three weeks at Great Ormond Street Hospital. Jenna had lots and I mean lots of intense physio and hydrotherapy. That was one of the hardest times. To see our daughter going through torture was ripping me apart inside. I wish I could have taken her place. I wanted to let the physios feel the pain like these children were and maybe they would have been a little kinder. Deep down though I thought well it's the hospital, they must know what they are doing. My job was to be there for Jenna after each session. She would cry, and I mean cry and so would I.
After three weeks of Physio Jenna was worse not better. Well that was even harder to cope with. We took Jenna to hospital to get better and she came out worse. Again the guilt that we felt was awful, you put your daughters life in these doctors hands, who are supposed to help them get better, only for them to get worse. I think I must have been going around like a zombie then because all my thoughts were with Jenna and how to help, I had this pit in my stomach all the time. Anyway we continued with the regime of physio through play like instructed and slowly, I mean slowly Jenna seemed to progress.

We now realise that is how it happens. I didn't like it and I still don't now.
In August 2001 after we had been on holiday for two weeks with lots of sunshine and swimming, Jenna announced that she felt like walking again without her crutches. She took her first steps unaided again. Well the joy that we felt is indescribable. That was the beginning of the end of our living nightmare. Well so we thought.

Jenna progressed very, very slowly but she tried so hard. Then the cold weather took hold again and Jenna was having more bad days than good days, but that did not stop Jenna. She carried on, in fact some days pushing herself too much so that she would then "pay for it" later.
By the Summer 2002 Jenna was having more good days than bad days again. Jenna said her pain was there but she could live with it more now. I think really she had lived with her pain for two years nearly she had forgotten what it was like not to be in pain anymore. It was so nice to see her walking, even running sometimes, even if she did "pay for it" later. Jenna was smiling once more and we became more relaxed as a family again. Our family life had been through hell. We went on holiday again in July 2002 and Jenna refused to take her crutches or wheelchair. We had a lovely time. We then came home and started block paving our front drive. Jenna helped.

August 25, 2002. That dreaded day. Jenna was helping Graham in the garden. Ten minutes after helping she came in looking drained. "Mum BOTH my legs hurt, I am going to lie down". Well my heart sank. Not both legs, Jenna only has RSD in one leg. I tried to ignore it as much as possible and Jenna struggled for a couple of days, but then seemed back to normal again. That was until she collided with her sister and dislocated (well that's what the doctor said) her good knee on September 3, 2002. "Rest it for a couple of days" the doctor said. But Jenna was unable to hold her body up with the other leg (her RSD leg) so was in her wheelchair for a couple of days. We then set the physio regime into place determined that the RSD was not going to take over again. It was not working and after two weeks of no improvement, Jenna suddenly told us that the pain had changed, it was now her RSD pain in both legs.

Our lives collapsed once again. Jenna became very angry and depressed yet again. I kept trying to keep her jolly and tell her it was only a minor blip and that we could get through this, but deep down I was crying so much inside. Why did this have to happen all over again.
We are now into February 2003. Jenna is in her wheelchair full-time still. We have a regime of hydrotherapy as often as we can and physio all through the day. She can stand maybe for ten to fifteen seconds at a time. Enough time to be able to shuffle herself to the loo, holding onto the walls, radiator, sink anything, and managing to suffer in silence. She used to cry out loud, but now it's silently.
My heart and I am sure Graham's are breaking. We live each day as it comes. Jenna will survive, we will make sure she does. She is a very tough little girl and determined to beat this nasty disease. We are so proud of her I can't describe it. I only wish it could have been me and not her. When I have told Jenna that, she says "but then who would take care of us".

The last two and a half years of our lives have been the worst I hope ever to encounter. We have felt worry, because we did not know what was wrong, anger because no one was helping, helpless because we did not know what to do, or who to turn to, grief because we were losing our happy little girl and stress because it tears the whole family apart. It's like being on a roller coaster, one minute up and the next down again. I only hope it stops soon.

RSD hurts, it hurts the sufferer, the parents, the siblings, and the grandparents.
I wish no one had to go through this hell.

Postscript.
Since this was written by my Daughter (Such a long time ago now. Where has the time gone)? I am happy to say that through hard work and determination on everyones part, but especially Jenna. She is now once more the happy girl that she once was. The Aqua therapy (especially) has got her back onto her feet and apart from the odd occasion, she can manage the degree of pain that she still has on a daily basis and to see her walk and sometimes run you would be hard pressed to realise that she is still under the shadow of RSD

I pray that Emily will also fight the hard fight and come through smiling.