To help get Bradley home

Sorry for the long read but hear goes!

Bradley my beautiful happy amazing funny inspirational boy.

Crazy about F1 especially Ferrari and manchester united. He had a big love for Disney pixar films, there wasn't much he didnt know. He loved playing his xbox and permanently attached to his phone like any other 13 year old.

He was diagnosed with autism when he was 2, but he never let that hold him back he did everything they said he wouldn't and just loved life most of the time.

Life changed. On the mornimg Friday 3rd November 2023, it was half term so he was off to spend the day with his Nanna and Grandad as he usually did in school holidays. He told me he felt dizzy and his eyes felt weird, his glands where up in his neck and was a little hot so I gave him paracetamol and a big drink of water after breakfast he said he felt better.

At about 5pm his Nanna called to say he'd gone really hot and been sick so I went to pick him up. Gave him more paracetamol and ibuprofen and he went to bed. This continued until the Sunday when he came up in a rash on his cheeks so along with the tempreture, I called 111 who made him an appointment at Ilkeston hospital. The nurse practitioner there who saw Bradley said to take him to A&E because he was so hot but below his knees and feet where really cold. By the time we got to A&E his temperature had come down a little. They took a urine sample and gave me some dyoralite because I'd said he'd been sick. When we where seen by the doctor. She initially said they would do some blood tests and keep him for observation but when she looked at his urine results changed her mind and sent us home, said if he was no better by Wednesday to get him seen again.

Monday morning his temperature and rash had gone but he said he still didn't feel right so we decided no school and another day of rest, then the same on Tuesday.

Wednesday 8th November 2023, he still wasn't right when I woke him but today was different. I got straight on the phone at 8am to the doctors and made an appointment for 10.30am. Bradley said he wanted to stay in bed a little longer which is definitely not like him, i said ok. I got his brother (16) off to school and sorted his sister (3) out when I went to get Bradley up at 9.30 for his appointment he was fast asleep again not like him. I managed to get him up and down from his high sleeper bed, but he then stood slumped in front of me with a vague look in his eyes. I had to dress him which again not right. In my head I was already skipping the doctors and heading for A&E, I left him sat in his chair while I went to put his sister in the car and come back with shoes for Bradley. When I got downstairs I heard a bang from upstairs, I called to Bradley but he didn't answer so I went straight upstairs to check and Bradley was on the floor having a full tonic clonic seizure. I immediately grabbed his phone and called 999. The ambulance arrived within 10 mins by this time the seizure had stopped but he was unresponsive for 10 minutes. The ambulance crew where amazing with him. While they where with him I called my husband in nothing short of hysterics as you can imagine nothing like this had ever happen before nor have I seen a seizure like this in real life. I told him that he needed to come home immediately.

We managed to get Bradley into the ambulance, by now he was awake but he was scared and crying like he didn't know what was happening or where he was.

On arriving at Derby A&E because he was conscious he was made to sit on a chair in the waiting room. we waited 15 minutes for a triage assessment with Bradley slumped over me crying on and off.

While in the triage room he couldn't answer the nurses questions and was quite sick.

He was taken through to a bay he lay down on the bed and said thanks Mum. This would be the last time he spoke a word or i heard his voice.

Given that he had been unwell and the seizure they decided to start some IV antibiotics, when trying to get the line in Bradley was really fighting the doctor this is again not at all like him. They finally got it in and eventually he settled and went to sleep for about 30 minutes.

Suddenly his eyes pinged open and he went into another seizure. This one lasted 4 minutes and 30 seconds at which point he was moved into the resus room where he was wired up to the monitors, over the coming 4 hours he started having more seizures each one getting closer together. At around midnight there was a bed on the Derby royal HDU ward, they managed to get some medication in him to try and stop him from seizing but nothing was working, they where coming quicker and lasting longer and around 11pm on Thursday 9th November after his brain was going into compleat meltdown he was now status epilepticus they decided to intubate him and put him to sleep to protect his brain from the seizures.

They found him a intensive care bed in sheffeild childrens hospital he was finally stablised enough to tranfer at 11am friday 10th november. He was moved by a COMET ambulance the doctor and 2 nurses and the driver where just amazing at what they do.

Once in sheffield they continued to try and stop the seizures but each medication they tried would work for a short while but then the seizures would start again. After 2 weeks he was given 10% chance of pulling though.

He has been tested for absolutely every viris, infection or disease known and the only thing that that tested just faintly positive was the herpes simplex viris. We where told they THINK it is a auto immune response to a normal virus that has triggered the seizures and diagnosed him with FIRES or NORSE.

He had stopped absorbing any feed so had to be fed TPN into his veins, he had medication to make him go to the toilet (number 1 & 2), medication to control his heart rate and his blood presure, as well as infusions of lots of really horrible medication such as Thiopental, very high dose of Madazalam and Phenobarbital. Along with lots of other anti epilptics and sedatives

At this point I felt like I was watching my beautiful baby boy pass away. As his Mum this was more than just heartbreaking it was completely soul destroying. There are no words to describe the pain I feel watching him go through this and feeling completely helpless.

At 4 weeks we where told his brain activity was flat and that it was only functioning to keep his heart beating and the ventilator was breathing for him, so they started to wean off some of his medication and Bradley decide he was also put on a medication called Anikinra.

In the coming 2 weeks instead of detiriorating as was expected my amazing boy started fighting for his life. He started to absorb feed. and slowly needed less oxygen, he started taking a few breaths of his own. He came off the Thiopental altogether. We started to see a few twitchy movements, he needed less of the other medication for his heart and blood presure.

We started the ketogenic diet (we felt this didn't work for him) he is now back on a normal feed plan to get himnto gain some weight.

On the 22nd December he had a tracheostomy, brain biopsy and briviac line put in.

After the worst Christmas ever, on January 3rd 2024 he was allowed out of intensive care and moved to HDU he gradually kept getting stronger just slightly each day, and medication reduced more and more. His final infusion of Madazalam was turned off on 6th January.

We then began talks about being transfered to the QMC to be closer to home and our family.

I should point out that the seizures where still there but where shorter and less often he had clusters of around 20 seizures lasting about 2 minutes for around 2 hours he would have some rescue medication and they'd stop for a while.

On Monday 22nd January he was transferred again by COMET to the QMC onto ward E40. We where finally out of intensive care.

Bradley started his rehabilitation.

On February 4th 2024 He was started on CBD and within 3 weeks the seizures had stopped.

We are now on week 21.

Bradley is doing well he is off all oxygen, he's had all his cannula and lines removed.

He has a peg now for feed and medication. we are now about to start steps to take his tracheostomy out. Heas had some set backs with chest infections and chronic annememia disease from all the strong high dose medication meaning he needs regular blood transfusions

He can move a little bit but not really controlled and he can respond to yes and no questions by shaking and nodding his head.

He knows who I am and I have had a few smiles. All thanks to the BRILL team at the QMC

The time has come now to talk about taking him home but for this due his catastrophic brain damage caused by the seizures he is now severally disabled, he will likely never walk, talk or feed himeself again he has been diagnosed with epilepsy, he will need 24 hour care for the reat of his life.

Our house needs lots of adjustments to accommodate his needs. The government give us a grant towards this but it is capped and we are around £20k short of what the estimated cost of the adjustments will be.

Anyone that knows me will know I hate to ask for help with any thing most of all money, But I'm desperate. I need to get me beautiful strong amazing little boy back home with his family and for this I need your help. Anything that you can please donate would be so hugely appreciated. I know it is alot to ask of people friends and family given the current cost of living crisis but honestly any small amount will help me and Bradley massively.

Bradley is not my middle child he is the centre of my world without him nothing feels right nothing feels the way it should, there is a huge hole in our lifes where he should be. I just need my boy home and my family back together.

Thank you for your time

Love Kelly and Bradley x