“I hope and pray Jake will get better very soon, god bless you Jake, Im thinking of you.
I cant believe your story, its made me so angry and its promted me to share my story with you all too...My beautiful mom was also misdiognosed.

In June 2008 mom started to feel chesty and she had a cough which she could seem to shift. Mom was never ill and didnt like to take medicine/pills. Honestly mom never even got a cold or anything!

Mom was still coughing and chesty and eventually we persuaded her to go to the GP. She visited the surgery on 2 separate occasions and both times she was told it was just a virus and she should take some paracetamol. She did this but Mom was still not well a few weeks later and had started to act a little out of character too. She just kept saying to us "I just dont feel right" and "whats wrong with me". Mom was still chesty and was struggling to sleep at night time too. On 2 more occasions we visited the GP and he advised us that he thought mom had mild depression. He gave mom some sleeping tablets (Diazapan I think) and told her to consider counselling.
It was so strange as mom was always so happy and bubbily.. she never moaned or said she felt down?

Over the next week or so Mom's condition rapidly deteriorated. She started to loose her balance and get very confused. She was still really struggling to sleep at night and would walk around saying she was really hot and couldnt sleep. Mom also kept saying her food tasted funny. We also noticed moms face/eye on the left hand side at started to droop. On occasions she'd also started to wee herself but didnt seem to notice. This was so unlike my mom.
We took mom to A&E one night as we were so concerned. They examined mom and the doctor sent her away that night with another mis-diognosis. The doctor said it was the onset of dementia!!! She was only 59 years old.

Of course, you dont doubt a hospital doctor do you so we took mom home. Over the next couple of days moms condition rapidly deterioriated.. finally it got to the stage where she was bed bound and she couldnt move her arms or legs and could not sit up. She couldnt speak and her face on the left side had dropped even more. She'd started to vomit and was fully incontinent. She then stopped speaking and struggled to open her eyes. We dialled the GP and begged him to come and see her, we just knew something was not right and thought it was possibly a stroke. The GP saw mom and called for an ambulance to come and get her and take her to Solihull Hospital. Again, I am angry as the GP called the ambulance station direct and not 999. The ambulance took hours to arrive!

When she got to A&E they told us Initially that they thought mom had had a stroke and kept her in overnight for a brain scan the following morning. It was when they did the scan that they discovered mom had a brain tumour which was causing the brain fluids to build up in her skull. As soon as they discovered the tumour they called for an ambulance to transfer mom to The QE Hospital for an emergency operation to fit a shunt - this is a devise which allows fluid to travel through a tube from the brain to moms stomach, releasing all the built up fluid and pressure from moms brain. The staff at the hospital were frantic, it was such a serious condition, mom was slipping into a coma basically, and there was a high chance she may die.
Thank god, the doctors and nurses at QE Hospital, Neurology Ward were amazing and the operation was a success. The following day mom was amazing, almost back to her old self - she could talk again, she was sat up in a chair, eating. She was fitted with a cathater as she was still unsteady on her feet - she had been bed ridden for a week or so. We were so relived though.

Over the next couple of weeks mom was kept in hospital and following a number of scans, tests and alot of examinations (much to moms frustration!) the doctors advised us the brain tumour was actually a secondary”

“This is appalling.This family deserve more than an apology they deserve a medal !!!!! Never have I known such a lovely brave bunch in all my life. Come on Jake you can fight this.and karen keep strong. All our love always, Moyra chris and Codie xxxxx”

“I find it quite difficult to understand why two children with such similar conditions have been mis-diagnosed by the same hospital. As close friends of Niamh and her family I have watched them go through this very difficult time, it is so hard to believe that another lovely family are suffering at the hands of our so called experienced doctors. My love to you all.”

“Hi jake ,we are friends of niamh and hope that you are soon feeling better ,Niamh is back to her old self (bossy) after her treatment and im sure that you respond the same, anyway this hostpital need to look at what they are doing ,how many more people are not been diagnosised ,keep smiling im sure you will be ok Best wishes The Holdway Family”

“Jake, Mary and family, we have read your story today, we are finding it hard to believe that yet again another child has been mis-diagnosed. We hope Jake is feeling better since we last spoke, we know every day is a challenge, but with the support of family and good friends it becomes a little easier. We know you met with the Dr concerned last week, we hope you made it through, the meeting, we know ourselves it's hard, but it's up to families like ours to make everyone aware of our chlidren's mis-diagnosis so hopefully it won't happen again. The Dr's keep telling us tumours are rare but we keep hearing stories like Jake and Niamh's and find this difficult to believe. Keep in touch, we are all hoping and praying for Jake, keep in touch, Jenny, Chris, charlotte and Niamh.”

“HI jake hope u are over your
tiredness and feel ing better. I know how it feels, love from niamh keep in touch”