I am Jessie Rooke and I am mum to Agent 44 aka George. James named him this as many would have seen in his video last year. George was born in July 2015 he was born with a heart defect and a cleft lip which didn’t need surgery. George is my rainbow 🌈 baby and I didn’t have the best pregnancy with him but nothing was picked up on weekly scans.

George had some patches of darker skin from birth but more came with time which my GP said were birth marks. We found out in March 2019 that George’s marks were Café au lait spots. At this point George had approximately 40/50 on his torso, he now has about 200 all different sizes. At his normal pediatric cardiology heart scan George was diagnosed with NF1 which is a genetic condition. George's condition is life long. There is no cure. I have been tested as it is normally passed on by parents but I haven't got the gene so this means that this is a rogue gene.

George was then taken for an MRI as an emergency. Sadly, it was there we found out that George has two benign tumours behind the eyes they are called optic glaucoma tumours. We then had 12 months of eye tests every eight weeks and an MRI every three months but GA takes its toll on George’s body. He wasn’t sleeping due to headaches and pains all over his body. I knew things were getting worse. He was struggling with every day to day task.

March 2020 we had our normal eye test and MRI but sadly this came back to tell us that George had lost colour vision and also up to 30% of eyesight in both eyes. Chemotherapy was to start immediately. As the pandemic of Covid started, we also started our chemotherapy journey on March 31, 2020. George was fitted with a port in his chest who he calls Dave. Dave has medicine every week and George calls Chemotherapy ‘go faster juice’. George has chemotherapy every week and has done since then. He is currently on week 57 and this will continue until October 2021. Then he will need an operation to remove ‘Dave the port’.

George was fantastic in the beginning and we had hair loss at 10/11 weeks in but then it grew back. He started to get angry and tired of going to the hospital - every week became harder. In September 2020, George had his flu jab and chemotherapy on the same day, later that day we was admitted for six days and since then chemotherapy has been hard work. He hated being trapped in hospital and he hated being messed about with all the time as he was on a drip.

George’s chemotherapy seems to be working and he is my little hero. Day to day, he is normally a cheeky 5 year old but some days it’s awful. He cries from the minute his eyes open. He gets sickness and tiredness which frustrates him as he wants to go to school and play. He has a tough time keeping weight on. As a mum I feel helpless. I just try to keep life as normal as I can.

NF1 has a lot of other things that comes along with it. George has hypo mobility which causes serious pains. He has broken sleep most nights. He has bad allergies. Learning difficulties. ADHD. This will not be his last lot of chemotherapy. George can have a tumour on any nerve ending at any time of his life for the rest of his life.

We are so thankful that James' family have chosen us in memory of James (Agent 43)