I feel so sad writing this, but some of you have followed me on Instagram and have followed a small part of George’s journey.
Two years ago George was diagnosed with two genetic conditions. One of which is called micro duplication syndrome which carries many features to it, with George he carries a vulnerable nature, he struggles in many social activities and he does find it hard in many areas of his life to fit in.
He feels anxious with loud noises, and struggles if he is out of routines. Most days out we have,he tries his hardest to enjoy them all.
I truly believe that in his heart, he wants to embrace it all.
He tries his hardest with everything. He will even try to race me.
He struggles with mobility so most sports he cannot do, or achieve simple tasks we all take for granted. Such as waking up and down the stairs unaided. He’s life is in his bubble, where he is happiest at home chilled out watching tv & feeling safe, warm and loved.
He had attended two state schools which for some children work, but for George he was sadly targeted by bullies due to his vulnerability and quirkiness. Ontop of all these worries he carries for himself, in constant fight or flight state, He was diagnosed with another genetic condition which is called MEN2B this will sadly be the reason for him to have to leave us one day. It is a disease which creates tumours in his body. Sadly he already had a aggressive tumour in his neck. the thyroid & tumour had to be removed. Part of the tumour was left behind due to being attached to his vocal cord.
After this, He seemed to be doing well.
He was happy at his new school Howe Green House Which is an independent school.
I need to add. The school have been amazing support from the minute George started. They supported us through his second surgery which was this year. George was finally accepted by all The children at howe green house. They loved his whole being. All of his happiness away from the home, has been at howe green. His confidence grew and he finally was part of a team and accepted for Gentle George.
His class mates, instead of mocking him would support him with his sports, he even began to love PE. I never thought I would ever hear those words come out of his mouth.
George sadly had to undergo second surgery only two years later, due to his numbers rapidly increasing.
This time, surgery carried extremely high risks. They had to remove one of the vocal cords so it was a concern as to weather he would speak. After surgery, they sent us home to recover, George went down hill. I got us an ambulance back to Great Ormand Street hospital where they took George back into theatre to flush him out due to infection. I was waiting anxiously for his return. When they called me to recovery, George was laying on the bed with a tube out of his nose, into his stomach. He was now nil by mouth. Due to a hole being made on his osophagus tube. This would have been a complication during surgery. Part of the tumour had traveled down the tube. Which needed to be removed.
We stayed in hospital for 9 weeks. It was hell. It ripped every single piece of my heart to shreads. My angel, baby boys quality of life has gradually deteriorated. he was on his bike the week before with his brother.
The love of my life is laying here believing mummy can cure me. I felt like i absolutely had no strength left. The time spent in hospital was total turmoil, watching George in pain. Up at 3am for bloods because his canular has stopped working, this by the way would happen every 48 hours, he had holes all
over his hands, he’s feet! Infections where caught, George went severely down hill and caught septis. He was clinically unstable. There were times I honestly thought I would lose him. I can’t even put it in words about how traumatic and Heartbreaking it all was. George one day, wouldn’t even speak. Not one single word. Not even a eye stare. He wouldn’t even take a glance at his baby sister.
My family came up and still he said nothing for hours. He’s spirit had left him. George had disappeared!
I felt a Sharp pain in my chest 24/7 my heart raced daily. I shock with fear. I couldn’t bare to hear the hospital door knock In the mornings to face all
the teams of doctors which needed to make plans for the next 24 hours.
That’s mum feeling like that.
I can not begin to imagine how on earth George pulled through. But he finally did. He got granted home leave. I was to care for him at home and administer his medicines through his tube, and all his milk feeds as he had still not healed the hole in his neck. The family was back together. George’s brother Albert was heartbroken missing George so much, they was back in each others arms.
I missed him dearly too. After 4/5 weeks Georges swallow test showed healing! This was a miracle, we was so relived. I then was able to start George back slowly on solid foods, purées, soups, building it up to mash, eggs ect.
He is now fully healed. Lots of rest is still needed, but I am able to monitor him. There is no diagnosis for George. But they are sadly unable to cure him. I find it hard most days to feel fully happy as I feel like im living with a time bomb. I just have so much unconditional love for George. He truly is the only one single person in the world who can make me really laugh. Like belly laugh from the pit of my stomach, all honestly want to do is hold him all day every day. Never let him out my site, and take pictures of every single inch of him. I would love for him to grow old and have his own family, get a job just be content and happy with all the simple things in life. I would still keep him in a protected environment which I no he would need, but I feel I am already grieving for the life I won’t get with him. After all sadness surrounding George, I need to make sure that he is happy as much as possible and to give him the best quality of the life that he has left. Funding has become an issue, so he is currently unable to return to howe green school where he felt most happiness and contentment. I would love to honour his wish. So I have made this page, purely for his school funding, in the hope that the rest of his school life till year 6. He is able to return back to howe green. He misses all of his friendships that he made there, he even misses all of his teachers (who misses there teachers) he misses PE! for the moment George will be monitored with visits to great ormand street and we shal have to be guided by them. I prayer for a strong future, that is not promise. But I need everyone to prayer for healing, and strength for George to remain strong. If everyone can see George well, there is power in positive thoughts.
Plz follow his insta page @herogeorge2020
I want to say thank you from the bottom of my heart for all who donate, even £1 is a little closer to his schooling wish. God bless you all and stay healthy. Health is wealth.
- Nikki Lorrimore
- Miriam Leary-White
- Maggs White
- Abigail Morris