Charlie's Bright Future Fund

I'm raising money for my little mircle boy Charlie.  Charlie is two years old and was born a beauthiful, healthy little boy.  The love I felt for him was overwhelming, we had such a bond from the moment he was born.  The very first night, he lifted his head and looked straight at me!  His strength and character shone through then and has carried him through ever since.  He still amazes me, and within no time he was loved & cherished by his sister & brother who were fascinated by his every move!  We were so happy to have this little bundle of love.  Life was good. 

Unfortunately Charlie became seriously ill at 3 weeks old, and faced a massive battle to survive.  We nearly lost him so many times.  I'll never forgot the shock at how quickly life can change, and seeing my baby so frail, clinging to life will never leave me.  Miraculously and against all the odds Charlie survived.  I thought life could back to normal but I slowly realised life is taking us on a very different journey.

We all like to be positive & hope for the best, I've been doing more than ever for the past few years & things have been amazing for my little miracle whose made more progress than I could've imagined!

I also realise I've cried my heart out & at times felt more lost, lonely and fearful than ever. Sometimes when things are too hard to accept we become masters of fooling ourselves. We convince ourselves it will all be fine & cling on to everything positive & totally ignore anything that blurs our perfect picture.
I've done that a lot. When Charlie became ill we were told even if he recovered he would be so affected he would have little to no quality of life, would never walk, talk or even breath for himself & was unlikely to know who we were. Even then I knew I'd never give up. We were asked to consider turning off all the machines keeping him alive, saying it might be kinder to end what would be a life of suffering although he was unlikely to survive so it may be best to let him go peacefully. I remember falling to pieces with a pain in my heart like the world just crashed in on me..... i thought this was it then I thought no.  It won't end this way. This isn't how its suposed to be.
I asked if they could make us turn them off they said no I said good. Then don't.  I told the Doctor's I don't care what they think, I know my baby is still in there & knows who I am, I want him to live. I knew he knew me. If a nurse shouted or alarms beeped be didn't flinch. But when I whispered "mummy loves you, don't be scared" and promised him it would be okay & sung twinkle twinkle his eyes would flicker! One doctor said it was a reflex. I knew Charlie was letting me know he was there & wanted to live to while he was fighting to survive, we had to fight to keep him alive.

I remember saying if he can even feel the sun on his face & smile or feel happy that's a life worth living & he certainly has done that & more! A life worth saving indeed. ♡ Recently I've had to face the reality in a new way. Charlie has overcome so many struggles and did things I thought he'd never do.....For the past few years I've convinced myself he'll overcome everything. We'll wake up some day, he'll be sitting having breakfast .....In a chair, totally straight not slumping, feeding himself, not choking, he can ask for more orange juice & maybe even go get it himself coz he's so clever! Then he'll get his own coat & shoes on & runs outside to play in the garden with his brothers! In my dream he doesn't hold on to the wall when he walks. He can see the step & runs free & happy, climbing jumping & laughing without a care in the world! I dream of him saying "mummy get my juice" lol I think he would've been a torture, a wee clever clogs & always on the go!

....In tears a bit now but I know that's a dream that won't come true any time soon.

I have accepted Charlie suffered massive brain damage that left him with Cerebral palsy, epilepsy, developmental delay and severe sight loss.
In many ways I can live with those. Awful as they are there are things we can do. I can show him how to play a game a hundred times until he can do it himself & I can be his eyes, walking and guiding him in new places. When he can't see I can keep him safe. When he's tired I can carry him.

The thing I find hardest to accept is his diagnosis of Microcephaly. Because Charlie's brain was damaged in so many areas and so severely, it isn't growing in the way it should. Again, I hoped he would catch up but recently I've had to accept otherwise.

Unfortunately there is no cure for microcephaly. Most children live only 9-15 years, with many facing years of slowly deteriorating before they pass away.  Charlie has always had times he would cry for hours on end, a painful, agonising cry. For a year he cried every night for hours. In December he had this day & night for almost 3 weeks. It was one of the worst times & while I thought it might have been an ear infection, after 3 strong anti-biotics the Consultant decided it was neurological. I could never understand why he would wake & cry so much, I think while sometimes it was cramps & stiffness in his legs I also think a big cause of pain has been pressure on his brain. He would sit & hold his head & cry. I hate knowing he's in pain & I can't help him.

The way I understand it a baby's brain grows a lot when it's young & it's bone is soft. After a year bones begin to harden.
Charlie's brain didn't grow much the 1st year, I think he was in survival mode, now his health is more stable he is learning & developing his head is growing very slowly but I think this causes him absolute agony with the pressure in his brain as it pushes through solid bone.

I described it to older children like when there's a flower in the garden growing through soil it's easy, but if u see a flower growing through concrete it's had a much harder job!

While there is no cure,the only possible treatment for microcephaly is lots of therapy. Studies have shown that children who have lots of therapy have prolonged and better quality of life.

So far Charlie has had great physio and done well physically & while I'm so grateful for that his speach therapy hasn't been so great, inconsistent therapy, several new therapists, gaps of 10 months while they were replaced then one session a month (!?) in his crucial first 2 years this has taken its toll.

There are lots of therapies we desperately need for Charlie, with the help of family we've been paying for therapies since he was 4 months old & he has responded so well, I think it's a big factor in why he's done so much better than anyone expected. This one is a bit more expensive & slightly out of reach at the minute. A therapy has shown massive hope in reducing the severity of his microcephaly is a treatment called ABR.  This has been used through Europe for many years with great success and is available in Scotland. I've been following  ABR children's progress for over a year & during that time I've spoken at length with the ABR team who feel they can help Charlie a lot. Not only can they improve his overall muscle strength and improve his Cerebral Palsy; their therapy also improves head size reducing microcephaly!

I am so delighted there is a therapy that can not only improve his quality of life & reduce his pain, but also hopefully prolong his life!

I really feel that now is the time to get Charlie this potentially life changing treatment. Every now & then I remember how fragile he is, not only when he's ill but occasionally I see him struggle with things he could do, he's keeps slumping in his car seat recently & I know physically, everything is so exhusting for him. I worry as he gets bigger his weak muscles won't be able to support him & recently it was recommended he have a leg brace to relieve twisting in his foot which causes pain in his knee & hip & it's already been suggested he is developing scoliosis, a curvature of the spine which for a 2 year old is pretty hard to take.

It's a reminder of what his condition may mean & for the first time ever I feel like the clock is ticking. He has fought so hard to be here & to know that we can finally help him is such a relief. I never really open up about the severity of his condition and his limited life expectancy is something I still can't think about but by accepting his condition I can try to change it, I don't want to mope & worry I want to do everything I can & be hopeful, that's what mummy's do, be brave & try to fix things as best we can!

I've opened a go fund me page to try & meet the cost of therapy. I would like to get Charlie so much therapy, consistent, intensive speach therapy would be fantastic which is about £55 an hour & his leg brace is £700 & needs replaced as he grows so that'll be expensive too but the one thing I really want to focus on is ABR therapy. I feel it is so crucial & will make the biggest difference. The total cost is £5500 per year. There has been a cancellation in March which would be great as the sooner he gets started the better.  This initial appointment & training session is £2450. It's a lot to find in a short time so I'm asking if any of my friends & family could donate a little or would like to do an activity or event for him I would be so so grateful!

Charlie has fought so hard to be here & despite his disabilities it's clear to see that he loves life! Whether it's getting cuddles & playing peek a boo or feeling the wind in his face (which makes him laugh & squeal lol) I can't face the thought that it could end too soon, from the very start he has shown that life is precious & worth fighting for.

Charlie is my wee hero. He never gives up & I know with the right therapy & support he can do so much more, even super heroes need some help now & again!

Please help in any way you can ♡
Thank you xx


https://www.facebook.com/Charlies-bright-future-fund-1513445635620052/