RC GIVES BACK
This month our thoughts are directed towards eleven-year-old girl, Vanessa, who is one of 35 people in the world who suffers from HIGH GRADE NEURO EPITHELIAL TUMOR(HGNET BCOR).
Her last chance to survive is an expensive operation that is in the region of €20,000.
Below you can read Vanessa's story that is provided by Tara Kerley from gofundme.com
"Our nightmare start the beginning of May…… My daughter was heaving headache, tummy ache, her left hand side didn’t work properly and was very weak. Her leg struggled, she couldn’t walk much. We went to the GP saying: something wrong with my child….Doctor send her for bloods tests. We were waiting for blood results over a week. I was starting reading on the internet what could be wrong……It was to many answers…could be stroke… Then nothing showed up at the blood results and the left side was getting worse. I start shouting asked my GP for the scan straight away NOW!!!!!!
We were in the hospital one hour later with EMERGENCY LETTER and they took us without any queue. 100 the same question from every single doctor: when that start up, what symptoms she has, family history etc. So we explain then the beginning of May she was very tired, sleeping a day like never before…had problem with talking sometimes and saliva coming out of her left side. Her concentration was bad and no appetite. Finally they take her for a CT scan and said: Vanessa had a big tumour in her right side of the head. It was shocking to hear …..my only child only 11 years old….:(((((((Why her????Why our Family????!!!! I had million question to the doctors, to the God, to myself….What were we doing wrong????
Doctors said: you’ll be transport to Dublin by ambulance shortly because we cant help you here with this diagnose……
An hour later we arrived to Dublin hospital. Another questions….its was around 1 am….we were tired and my head was split by half…. I was devastated…..Next day she had MRI scan. Diagnose was like the worse nightmare….Vanessa have a brain tumour 7,5*5 cm……They shows us the scan and size of it….I couldn’t stop crying….I couldn’t sleep…I couldn’t eat, I couldn’t think…..nothing is worse for parents to hear about the only child diagnose like this…..Ependymoma Grade 3….
Four days after she had a surgery for 6 hours….all went well….I think…Doctors said they almost 90% sure they took it out…but they cant guarantee is some cells left…After surgery she back to normal, no headache no pain, left side of her limbs was perfect like nothing happen before….Three weeks later I got the call from her doctor….Elizabeth I just want to tell you we got biopsy result. Its not ependymoma …. It’s a HIGH GRADE NEURO EPITHELIAL TUMOR(HGNET BCOR) and its only few months left for Vanessa…. Week later I get in touch with doctors in Poland asking what else we can do????That day my life was over… Two months after surgery she start radiotherapy. Two weeks later she lost all hair….was very stressful, hard on treatment. We spend some days from 3-6 hours in the radiotherapy hospital… In November she starting chemotherapy….will be much harder….I am still in contact with other doctors to find out what else we can do for her….Its some new technique call NANO-TERM in Germany (€40.000) and also in Poland cost around €20.000. Is that be helpful for her? We don’t know yet…She is the first case in Ireland with that type of the tumour…..its only 35 cases in whole world….We be try do everything to help our daughter be alive as much as possible, doesn’t matter that be here or other country."