Update

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

Alfie’s Hope Fund – March 2017 Report

Alfie’s Hope Fund – Monthly Statement of Income and Expenditure
Thank you so much to all those family, friends and people we have never met for their generous contributions to Alfie’s Hope. People have knocked on our door with cheques or put them in our letter box. People have donated money to Just Giving and people have let us know that they are planning fundraising activities for future months. We are humbled by your generosity and our spirits are raised by knowing that so many people care about Alfie.

Statement for : March 2017

INCOME
Total deposits to date

Just Giving Account £ 5,118.00
Alfie’s Hope Bank Account £ 1,095.00

TOTAL £ 6,213.00

EXPENDITURE
Items Approved by LB and MP Payment to: H.Deacon
Childrens’ passports £ 121.50

CLOSING BALANCE
Just Giving Account £ 5,118.00
Alfie’s Hope Bank Account £ 973.50
TOTAL £ 6,091.50

Faith

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 ❤❤❤❤

 

 

Breakfast

When we are in hospital with Alfie I try to think of ways to get through the night. Nights are really horrible for Alfie it’s when he has his seizures mostly and they always come together and it’s frightening.

It sounds mad but I just think about breakfast and what I’ll have. If someone is coming in to sit with Alfie, then I’ll get to sit alone in the cafe at the hospital and eat all by myself which is actually the only time I do that and that’s a bit of a treat!

I’m sure most people have lots of things to look forward to like nights out with friends and partners and day trips with families. Currently we’re just in a round a bout being at home then being in hospital so these sorts of things can’t be things I look forward to as they don’t happen so I look forward to breakfast!

Before Alfie was born Drew and I did NCT classes to try and prepare us for parenthood. I can say in hindsight they weren’t much good and nowadays there’s lots more classes that are more holistic and help you to think about the choices you need to make not just how to bath a baby!

I met some lovely people on my NCT class some of whom I still see now. One lady was what I would call a natural mama! She is lovely and talked to me about whether we were vaccinating and at the time I thought of course we are!? But she did make me think and I started to talk to people about it. She invited me to an Arnica group meeting, they are a natural immunity group who advocate using natural ways to keep healthy and not vaccinate. They can also give you loads of support in choosing a natural life and the Facebook page is full of mummy’s who’ve chosen that path. I thought to myself ‘it’ll be a load of hippys don’t think that’s for me’. I hate the fact I was so judgemental but unfortunately I think that’s a bad human affliction many of us have.

When Alfie has his first seizure I felt like it all fell into place, the vaccine reactions, the unhappy baby I had, it all made sense he was vaccine damaged and now his neurological system was going crazy! I then became a member of Arnica and it’s one of the best things I’ve ever done. They are a great They’re main advice about vaccinating is not to do it if you’re unsure but to research and talk to your GP and only do it if you feel sure it’s right for you and your baby. Unfortunately you can not undo a vaccine once it’s done if it has a bad reaction. I’ve learnt so much about diet, herbs, supplements and I’ve made friend for life which I’m very lucky to have done. I’ve also learnt loads about vaccines and the lies we’re told!

I’m not an anti Vaxer, I’m a pro choicer! Vaccines are not mandatory so all parents have the right to choose and be informed. All parents have the right to vaccinate too and I’d never judge either way. We all get inserts for drugs unless it’s a vaccine then miraculously that doesn’t happen. I believe in confident informed choice for parents not bullying by doctors or friends.

What has happened to Alfie is so rare but if I’d just listened to my friend and made more of an informed choice I might not feel so guilty. If I hadn’t been so judgemental I might have learned something and been a more confident mother. If I’d listened to my gut feeling about vaccines and not listened to others. The what ifs come thick and fast! I had questioned them before I vaccinated Alfie and my GP said ‘oh millions of children are vaccinated every day and they’re ok!’ I felt stupid and like I should not worry about their safety.

So I sit here by Alfie’s bed hoping so much that the seizures will stop and he will be well again. I dread the nights it makes me feel sick to think that I’m going to have to watch him all night and worry what might happen. I’m exhausted having only had a few hours sleep last night but the only thing Im looking forward to is breakfast, I can’t think further than that, it’ll get me through!

Much love xxx

Waiting…….

Its been seven days now since Alfie left hospital, and as the days roll past and Alfie is ok you’d think I would start to relax and enjoy life more. The truth is that I feel completely the opposite. I feel like Im waiting for the car to crash all the time. Im so on edge, I look at what he does, how he eats, when he goes to the toilet, I become obsessed with needing to know when he’s going to be in hospital. I suppose its a control thing, if I can predict the night it’ll happen then I can cope with it. But actually all Im doing it causing myself to feel really tense. My heart is racing all the time. I feel like Im ready to fight at all times. I dont sleep, every time Alfie moves at night I wake up and check he’s safe and not having a seizure.

I wish I could learn to relax and just take things in my stride, I wish I could just accept what is happening to him and know that we all cope when it happens. But all I think about is the way I feel when I have to hold Alfie after he’s had a seizure. What accident and emergency was like the last time I went in. Will we be able to get a cannula into him or not? Will he scream for ages until the medication works? All this goes round and round my head all day and night and it gets worse and worse until Alfie has seizures then it passes. Because when Im in the moment that scares me the most, when Im living the nightmare I realise I can cope and I am strong and I get on with it. But when Im just living in the fear of what might happen thats when I struggle to cope.

I dream of going to bed and sleeping without fear or worry, without waking up worrying about whether Alfie is breathing, whether he is alive or not, have I missed something? I dream about basic things like being able to have a bath and go to bed and read without having Alfie in my bed. I of course love him more than anything but I just wish I had my own space, somewhere that was for me and only me. Drew says things will change and it will get easier, he’s so positive, which is great. The little voice in my head tells me differently though, it tells me that this will be my life forever.

When I look at Alfie when he’s well, I see such a wonderful, happy little boy who loves his rugby ball and being at the park. Life is so simple for children they dont need much to be happy, just someone to spend time with them and for them to feel loved. Im so lucky to have him, I just wish I could make him well. I have it in my heart that I can not accept his fate. I will not accept that this is his life and thats it. I will not accept that this is my life and thats it. I want to be happy and enjoy my life with my family. Now this has happened to me, I have grown up so much, I realise what matters and what doesn’t. If you have health and love, you dont need anything else, its all just a bonus.

Xxx

Getting started

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