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MENINGITIS STRIKES WITH LIGHTNING SPEED AND THREATENS TO TEAR A LOVING FAMILY APART


We are so lucky he’s here but when you see your boy with no legs it’s very hard! BOTH his legs have been amputated and his fingertips have fallen off. But little fighter Robbie Jones has battled back from the brink of death after suffering from meningitis.

The 23-month-old's parents Jill Graham and Wayne Jones woke to find him covered in black and blue bruise-like marks, which they thought was an allergy, however doctors at the University Hospital of North Durham confirmed he had group B meningococcal septicaemia, for which there is no vaccination.

The youngster was transferred to Newcastle General Hospital's paediatric intensive care unit where he was prescribed powerful medication and pain killers, and Jill and Wayne were told Robbie's chances of survival were slim.

Wayne, 35, said: "The doctor said it was one of the worst cases he had ever seen." "It looked like he had been beaten up, he was bruised all over. It was actually his blood clotting. He was swollen all over, you couldn’t even see his eyes. It was so frightening as it didn’t actually look like him."

The couple moved into a hostel attached to the hospital so they could continue their vigil, and after five days Robbie came off the ventilator but his condition took a turn for the worse as his fingertips turned black and his feet were freezing.

He was moved to the city’s RVI, where surgeons amputated both legs and fingertips on his left hand as septicaemia had spread.
Jill said: "The doctors have been amazing, they have been honest with us throughout. It took three days for me to understand what was going on. We can't believe this has happened."
"As parents you try and do your best for your children from the time you are pregnant by not drinking and eating well, so they can get the best in life and all of a sudden not even two years later you get a kick in the teeth. I keep thinking what did we do wrong?"
The 28-year-old added: "It didn't hit home until we were told the doctors would have to amputate, otherwise Robbie would die. We were both hysterical."

Wayne, who works for Thompson’s building merchant, said: "When we were told we were allowed to see him, Jill walked into the room and I just put my head in the door, I couldn't go in. We are so lucky he's still here but when you see your little boy with no legs it's very hard."
"When you are a dad and you want a little boy, you want him to do everything you did. I played football for 15 years and it tears at my heart to even think about it."  "We will get on with it for the bairn's sake but I will never get over this. He has had so much taken away from him and every step is going to be a hurdle."

"It has only been a couple of months that he has been running around and now that has been taken away from us. He is going to have to learn all over again." "Even when I walk down the corridor and I see a little boy walking along it makes me cry. We had heard about meningitis but had never seen the affects it can have. It has been our worst nightmare."

The couple, who also have four-year-old Abbie, are now looking forward to taking Robbie back home to Bowburn, County Durham, and hope it will be possible at the end of the week, but Robbie will have to keep returning to hospital for skin grafts and in four months he will be measured for prosthetic limbs at Newcastle's Freeman Hospital.

Wayne said: "Robbie loved shoes and if there were any by the door at home he would put them on. Now he won't be able to do that until he has prosthetic limbs."

"He knows there is something different as he keeps looking at his hands. He has also started pointing at the floor as he wants to go down. He also rubs and strokes his right leg but I don't think he has properly realised yet."

"It breaks our hearts to look at pictures from before. It's like we have lost something, we are grieving. In the morning I wake up and wonder whether it's a bad dream."

Jill said the support from hospital staff, family and friends has been overwhelming. She said: "We can't thank everyone enough for all their support, the doctors, families, friends. We couldn't have done it without them."  "So many people have come forward saying they would like to do an event to raise money."  "It has made our family so much stronger and we have met a lot of people. We have also realised there are a lot of people in worse situations."


Friends and family have organised charity events to raise money for Robbie and the Meningitis Trust. 


                                          One year on


Well we are now over a year on from the heartache in July last year of Robbie contracting Meningitis, Its been a very difficult year for Robbie and his family still trying to come to terms with what happened.

Robbie is an extremely happy little boy, we have all said that last year he fought to be here and now he is so pleased he did so. He is such a character, very cheeky and really loving towards his friends and family.

When Robbie left hospital in August last year he was heavily bandaged and was to be fed for 8 hours every night through a feeding tube, the feeding tube was taken out on Monday 22nd September, just 1 week after his 2nd birthday and his final bandages were taken off just 2 weeks after that.

Once Robbie had his bandages removed he seemed to get around very quickly, rather than crawling Robbie sits on his bottom with legs in front of him and uses his upper body strength to lift his body from the floor and swing back and forth on his arms. He can now climb up and down the stairs and can get around nearly as quick as we do, he is now in the process of trying to walk on his legs by standing on his left knee and the tiny stump he has on his right side without using hands at all.

Robbie received his new limbs from The Freeman Hospital on 25th November 2008, we had to leave them round the house for a couple of weeks for him to play with and get used to them, I would then put them on for a couple of hours each day. Robbie then started Physiotherapy with Linda from Chester-le-street children’s centre, which started with standing work and also group work with other children on all of their senses.

Robbie started wearing his limbs for full days from January 2009, from then Robbie was receiving intense physiotherapy, Linda was encouraging him to walk around the table for different items, then moving things to a table behind so he was learning to turn around and pick things up and bring them back. He also has regular sessions of hydrotherapy and wearing armbands he is very confident in swimming alone.

Robbie now uses a small walking frame to help him get around with his limbs on as he still hasn’t got the confidence to do anything alone yet, he is slowly getting used to the limbs but with them being so heavy and the right leg amputation above the knee he still struggles to carry them around.

Robbie has now been discharged from the scar clinic as his scarring is clearing up very well and the Plastic Surgeon has now put Robbie down as 6 monthly visits due to him recovering from all operations

Our Aim for Robbie this year was for him to walk down the aisle for his mum Jill and dad Wayne on their wedding day on Saturday 4th July this year. Robbie did an amazing job walking down the Aisle with his big sister Abbie to meet their dad, it was brilliant, there wasn’t a dry eye in the house and they both did everyone proud.

On the 11th June 2009 we took Robbie to meet Mark Ledger a consultant from Dorset Orthopaedics, this is a private company who deal with ‘life without limits’ Mark advised they would be able to provide Robbie with better limbs, much lighter and a lot easier for the family, and Robbie, to operate. We have just received the quotes for £9.000 for both limbs to go private so we are heading to Dorset on the 25th August to start the process and hopefully these will be better all round for Robbie to handle.

Many many thanks to everyone who has helped with the Fundraising for Robbie. In the first year there was an astonishing £95.000 raised and added to his Trust Fund which is an amazing amount and we cannot thank people enough, we hope we can keep it up and do as much as possible to keep the funding going as I’m sure you will all agree he deserves every penny .

Thank yOU