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My name is Jessica Simpkin, I am 29, and I am registered disabled, and I have learning difficulties.
I want to help to raise money for research into childhoodbrain tumours, so that that the treatment and cure does not cause the problemsin later life that I am experiencing. I had a malignant brain tumour when I was3. It was a Medulloblastoma tumour, and it made me very poorly. I had anoperation to take most of the tumour out. I then had Chemotherapy (which didnot work), and Radiotherapy to my head and spine. All of this treatment savedmy life, but I have lots of problems, some due to the tumour and operation, andsome due to the radiotherapy.
It left me with a weakness on my right side, and my hairstopped growing properly. I had to learn to walk and talk all over again. Theradiotherapy affected my normal growth, so I am now only 4ft 8” tall. I have anumber of other conditions as a result of the treatment. My thyroid gland doesnot work properly, I have scoliosis, and it has made me sterile. I also wentthrough puberty very early. I also have a permanent shunt to make sure that I do not get too muchpressure pressure in my brain.
The radiotherapy treatment carried on working for manyyears afterwards, and when I was 19, it was found that this had caused me tohave another brain tumour, a meningioma. Apparently this had been growing veryslowly for several years. It had been giving me headaches that I thought weremigraines. This tumour was taken out in an operation, and it took me a long timeto get over this. It left me with a weakness in my left side, and caused me tosuffer with epilepsy. The hospital couldnot stop me having fits when I started coming round after the operation. Theyhad to give me a drug called Phenytoin. This made me think I was on a boat tripsailing to Macdonalds, and I could see it! It was a real mystery tour that hadmy parents laughing while they sat beside me. It felt like I was rocking fromside to side, and I kept thinking that I would fall off the boat.
I had to have weeks of physiotherapy to try to improve mymobility. I also had to have another operation during the physiotherapy,because I had a cyst where the tumour had been removed.
The radiotherapy has also caused me to have a problemwith the blood vessels in my brain. I have a condition called degenerativearterial stenosis, which means that the arteries and blood vessels in my brainare narrowing. This has caused me to have strokes and TIAs, and I now have totake blood thinning tablets on top of the other 23 tablets I have to take everyday. I have also had a procedure called an EDAS, where the surgeons have takenone of the arteries from my scalp and attached it to the left side of my brain.This is to help the blood flow in my brain and try to stop me having a strokeon this side of my brain.
I had an MRI scan last year, and I now have threeadditional areas of Meningioma growing. I am waiting to see if there is anything thatcan be done with these, and it is likely that I will keep getting them. I havenicknamed my tumours Woodpeckers, because the pain that I used to get was likea Woodpecker hammering away inside my head.
These are just some of the problems that have resultedfrom my tumours and the treatment that I have had. I still try to enjoy my lifeand keep a positive and happy outlook. Sometimes my problems do upset me andmake me sad, but I know my parents and friends will always give me love andsupport, and help me through the sad times.
I hope my story will encourage you to help fund this vital research, and make it so that other children with brain tumours do not have as many problems as I have had. Every donation that is made will help to make this happen, so please help if you can. Every £1.00 donated is a small step on the road to success.
I have now found out that I have 5 tumours growing. They are Meningiomas. I cannot have them cut out, but they may be able to treat them with a special radiotherapy called Gamma Knife therapy. I will now have to decide whether to have this done. There is a small risk of side effects from this treatment that I need to consider.
I have now had Gamma Knife Surgery at The Royal Halllamshire Hospital in Sheffield. I was under for nine & half hours and they treated me for six tumours. We will have to wait six months now to find out if the treatment has worked and what side effects if any I might get. This is why fundraising is so important to me as I do not want 1 single person to go through what I have/am.