It’s been sometime since I wrote an update. This we’re so hard and upsetting that I felt all I was writing was about how tough things were.
We now have some good news!
We have been in Holland since September and started medical cannabis almost immediately. Alfie took some time to respond but has now been 55 days with only four seizures. This is such a major improvement we are so excited to see it. We still have a long way to go but I hope that cannabis will help him to lead a better and happier life.
We have seen Alfie’s consultant in the UK and he is now beginning the process of applying for a license so we can use medical cannabis in the UK.
Thank you so much for you continued support and we hope we can get Alfie home where he belmgs very soon.
Much love xxx
Unfortunately we have seen no improvement in Alfie’s presentation, he still continues to have clusters of seizures every seven to ten days sometimes less.
Weve now moved his complete care to Oxford Children’s Hospital and we have an amazing doctor who is extremely supportive.
He has tried some other treatments for Alfie but unfortunately nothing has helped. The only medication that helps him is steriods and if we continue to use this drug so much Alfie’s out look could be bleak.
We are now making plans to go to Holland to start medical cannabis treatment. We need to raise as much money as we can to enable us to stay there for as long as possible in the hope that this treatment will work for Alfie.
Thank you for your continued support and love. Together we will make Alfie well. Xxxx
Its been a while since I’ve written. Lots of things are going round and round my head all the time but I just don’t seem to get time to sit and write it down. I’ve been feeling quite low, things are tough when Alfie gets out of hospital he can be aggressive and random and not our son and we feel such grief about it. He did manage to get to school on Thursday and Friday last week and he went swimming on Friday morning, he absolutely loved it. It made me feel such pride to watch him in the water with Miss Fearn his one to one. He smiled so much and called my name, I felt so tearful, I really do appreciate these small events they are what keep us all going. I talked to some of the mums too about life and I just loved feeling normal, just doing normal mummy things.
Two weeks ago I dislocated my knee. I did it on Alfie’s bed side when we were in hospital. I can’t believe I did it really it was such a freak accident, but my mind isn’t on life, it’s so all over the place I probably wasn’t concentrating. It was so painful and frightening, I screamed so much I think the nurses on the ward must think I’m nuts, I just struggle to stay calm, I think I feel such anxiety all the time that it comes out so quickly I can’t control it.
I always believe a positive comes from everything and the only thing I feel is that hurting my knee has made me stop, I can’t do what I used to do and the world hasn’t ended! The house is still standing and actually it’s made me realise that I need to learn to just relax and try not to feel like if I’m on hyper alert all the time Alfie will not have seizures, as that’s how I’ve felt before. If I’m full of adrenaline all the time it won’t make the situation we find ourselves in any easier. It won’t change anything it just makes me ill I feel like I’m going over the edge, most of the time and nothing can stop me. Now I’ve had to stop, it’s stopped me I can’t be on edge because I can’t do anything. As I say I think everything happens for a reason.
Were not sure where Alfie’s story will take us, we’re so desperate to help him all I can say is we need faith, faith to know that something will turn up, we may raise enough money to take him abroad, or the new diet might work, or the seizures might just stop for a bit (this can sometimes happen with this condition), but to know that so many people believe in us and have faith in us has really spurred us on to keep going and determined to make Alfie well. You have given us the power to hope that is so powerful!
I’ve met some amazing people and spoken to people who are truly inspiring. I truly believe that the legalisation of medical cannabis is only a matter of time we just have to keep making people aware and fighting for what we believe our son and many other poorly children deserve. The chance at a good and happy life.
Much love xxxx ❤❤❤❤
The reason for deciding to put my words down is simple, I have a child who is very ill and I need to talk about how I feel about this. I will also keep you informed about the journey we are going on, trying to get Alfie treated with medical cannabis. I will tell you about our experiences in hospital and with doctors. I’m sure they’ll be happy times and sad but I want you to come on our journey with me. With you all behind us we feel stronger and will achieve our goal, to give Alfie a wonderful, happy life that he deserves. I also want to focus on Alfie when he’s well, so you can understand why we’re so desperate to make him well. There’s thousands of children out there that are suffering, we must focus on making Alfie well and happy and how we’re going to make that happen.
I have looked for therapy and holistic ways in which to cope with my pain and to be honest some things work, some things dont but what does work for me is to talk about how Im feeling. Writing is a way of getting it out and feeling like someone is listening. Im very lucky that many people do want to listen to me but I find it really hard to personally open up to people so writing things down doesnt make me feel vulnerable. When I appeared on This Morning, I met a blogger, she was lovely and she said to me, write a blog, youre stuck at home all day and you have some many things going on in your head, just write it down. It was just a light bulb moment as I just thought ‘Yes’ this is brilliant, I can write and talk about what’s going on. I sometimes feel so isolated at home all the time, that writing will give me something for me, which is mine and no one else’s. Something I can do to feel connected and use my brain!
I realise that many people probably wont want to hear about the boring day I had at home trying to juggle my kids and the thought of what to make for dinner, but also I dont want to make this just about the drama. Whilst there is a lot of drama in our lives at the moment, there are also moments, of laughter and fun and many moments to be truly thankful for. As a carer to a child there are also loads of moments when you wish it wasn’t you doing it. I love my children more than anything but if I had a choice being one of their long term carers would not be a choice I’d make.
I have spent nearly five years consumed with fear and pain and feeling like I cant get up in the morning. I have gone from being a happy and confident person, to a person who has withdrawn from life because I feel so much pain about my sons condition and what I have to see him go through. This makes me so sad, I feel like I’ve lost myself the person I used to be. I’m hoping if I can make Alfie well that I’ll find her again.
I have started to try and take each day hour by hour and not think of the future or the past. The past makes me feel massively guilty, because I feel like I should’ve known and I should’ve protected my boy from the pain he faces and the future frightens me as I just cant face the fact that this situation that we face with Alfie could be something we have to deal with forever.
Thanks for reading. Much love xx