I could not be more prouder of my big brother Lee for running the london marathon for my baby boy Finley aka Captain Helpful, Finley has a Genitic Disorder called salt wasting congenital adrenal hyperplasia (SWCAH for short) ive never shared this with anyone else apart from my family mainly because the past 9 months have just been so hard but here goes heres Finleys story....................................................................

Finley was born on the 1 February 2012,a healthy baby at 7lb 6oz and from what we knew everything was ok. He went jaundice with in the first 24 hrs of birth which I have since been told is a sign that something was wrong. This however didn’t seem to bother any oft he mid wives that looked after us and we were sent home.

 

From then on Finley slept and that’s about it, everyone that came to see us, or we went to visit said the same thing, I'm yet to see him awake……. This is what new born do right?? Well on the 15 of February our lives changed forever and everything we knew was torn apart. I couldn’t wake him up for a bottle he would just kind of open his eyes then fall back asleep, and then he was sick this bright green liquid (and I'm not kidding Kermit the frog green) and these alarm bell started screaming in my head that something was very wrong with my baby boy. We then rushed him to a&e and thank god we were scene right away to be told he bearly has a pulse and before you can even blink they rushed him away to then watch 5 doctors trying to fight to save my little boys life is something that has scared me for life, he was so poorly that they couldn’t find a vain in him at all and the screaming that was coming out of him was just heart breaking.Once they finally got an I.v in him for fluids, they started asking so many questions about him about us etc and the whole while I kept thinking I’ll wake up in a minuet I have to this can’t be happening. After a few blood tests they said to us what they thought was wrong, that this level in his blood is this and that level is this, but at that point the only thing you want them to do is save his life the rest can wait. We were then told we won’t be staying in Colchester he is to poorly and we need to go straight to Great Ormand Street, but they didn’t have any beds so where then going to be sent all the way to South Hampton, but Dr Cackett said its safer to stay put as if he was to get any worse this would be a better place for him than in the back of an ambulance, and then move him when he is stable.

 

We were moved into Colchester Childrens high risk ward where we then spent the next four week of Finleys Little life hooked up to so many machines watching him fight for his little life. This whole time in my life is like a dream (not a good one I have to add) it’s like it was happening but wasn’t if that makes any sense, at the time I was in so much shock I didn’t realise how bad things were, that may sound stupid, but I just kept saying to myself this can’t really be happening they will come and tell me they have got it all wrong and we can go home.

 

So For them Four weeks we watched him fight and fight hard to stay with us, days and nights didn’t have any difference to me, as they done tests on him every two hours so sleep was something that was just impossible to have as you would just get him down to sleep and then they would come in and wake him back up, then again you would try and get him back to sleep and the same would happen.

 

I cant even begin to explain how it took effect of me not only was I trying so hard to deal with what was going on and why this had happened but I was also trying to understand all the information I was being told about what they needed to do, why they were doing it and so on but with the emotions that kick in its impossible to process any off it. And not to mention id just given birth for the first time also.

 

We got told what it was they though Finley had something called Congenital Adrenal Hyperplasia but they were 99% sure he had a rarer kind called Congenital Adreanl Hypoplasia I couldn’t even say this to start with I had no idea what it was nor what was going to happen and being stuck in hospital I couldn’t look it up for myself which I was kinda glad about as I just wanted to get him to a safe place and then know he was going to be ok then deal with what was wrong I also had this guilt building up inside of me that i had done this to him while i was pregnant and this whole thing was my fault, ill never be able to explain how that made me feel i was so scared that i was to blame for it all as id been the one taking care of him inside me for the past 9 months that i must have done something wrong.At some point Karl took over so I could go home refresh and what not then I looked into what it was he had and at that point my heart broke this really was something bad that wasn’t going to go away once we were sent home it is going to effect him the rest of his life. I have to say this made everything so much harder. We had such a rollercoaster ride in hospital, there were days when we thought he would be going home the next day and before you know it he went crashing down hill and we were back 2 square one again. Karl took over from me on a Saturday night and I was so worried about him before I went home as just before I left they were worried about his blood results they had done an hour before and Karl said no its fine just go home and sleep he will be fine and when I was back in the morning he was hooked back up to all the machines so it was a lot of one step forward and three back.

 

Over the course of them weeks it was made very clear that he will need medication for the rest of his life, this is a big blow to take and a very worring one at that, it’s a massive weight on your shoulders to know that I'm responable for keeping him healthy that I need to be on top of everything the whole time so he stays well and if I don’t it will be my fault he is poorly, this is everything from making sure the does is right to it being given at the right time of day and that we never run out of medication as one of his medications is made for him and takes over a week to be ready so I always have to be one step ahead. He also has to take an emergency injection with him where ever he goes, I have been trained in giving him this it is for when he goes into adrenal crisis, and if he doesn’t get medical attention straight away and get this injection he will die. The only other person who has been trained in this is my mum so she is the only person I feel safe with leaving him with, this is nothing to do with him being looked after its just if the worse is to happen and he needs the injection she knows what do to. Even leaving him with Karl worries me sick as he doesn’t know how to do it and not all ambulances one carry the injection nor do the people on them know what to do, as the longer Finleys goes without it the more damage can be done to him and in the worst case he will die.

 

After we finally got Home from Colchester we spent a week at home trying to come to tearms with our new life and what had happened before we were sent to Great Ormand Street for a week. This was so they could take him off his medications and under a very careful eye watch how his body work (or indeed doesn’t) and how quick he goes down hill, This for me was hell on earth I had just got him back to being healthy and then had to watch him slowly but surely crash again in front of me. I kept asking the nurse that was looking after us how he was doing and she kept saying yeah he is fine nothings changed, I knew this was a lie because ive watched it happen before. I started to get very upset and angry that I was being kept in the dark, so thankfully one of the Dr’s working with Finley came to see me and was then explained that he goes into crisis a lot quicker than they had though as they had all these different tests all planed out for the week we would be there and it all had to stop as he needed his medication straight away. And the out come was that he can’t go longer than 24 hours with out them before going into adrenal crisis. i also had the joy of being told that from when Finley was taken into a&e they have never scene blood levels like his in a living child before, this was like a sledge hammer hitting me and i realised just how lucky i am to have him still, and for the wonderful team at Colchester for saving my baby boys life, mainly Dr Cackett she is an amazing women and know pretty much straight away what was wrong with him and knew what to do. she and her team saved my boys life and i will never be able to thank her enough. and since this all started she has been an amazing doctor and has gone out of her way to make sure Finley stays healthy and safe. if you ever read this Dr Cackett i think you are an amazing Lady you are my hero!!!!

 

We have been in and out of hospital since, we have to go every 4 weeks for tests to make sure he is on the right medication and that he is healthy and well, but we have also had a lot of days spent in the childrens ward as we cant take anything for granted, so as much as I never wanted to be the kind of mum that worries about every little thing it has been taken out of my hands and now have to be like that so he can stay healthy. We got told told so many times while we were in hospital that Finley will live a ‘normal’ life, in Dr eyes maybe but our life is far from normal. I know I'm very lucky as there are 100’s of things he could have had that are a lot worse and function wise and in his brain etc Finley is fine so we are blessed in that respect. and having to spend time in Great Ormand Street brings that home to you when you see so many truely poorly kiddies in the same place, we are lucky compaired to some that dont ever get to take there kiddies back home.

 

From then till now it has been tough, really tough I think ive been through every emotion going to start with it was anger why the hell did this happen to him he is just a tiny helpless little baby, there are people in this world that are pure evil and get a better deal In life than he has but then the world doesn’t work like that does it. Ive also been angry at other people when they do nothing but moan about there children playing up or doing this that or the other, be thankful they are well enough to be doing them things (p.s there children that’s what they do) or people that feel sorry for themselves, trust me you have had it easybe thankful for what you have and get on with it. Ive also been so low that I didn’t want to deal with it anymore but then realise how hard Finley fought to be here I need to fight even harder for him because I'm his mummy. I have spent days on days doing nothing but crying when it finally hit home everything that happened what ive watched happen to my boy, it changes you as a person and if ive learnt one thing this year its that life can be very lonely when you have this kind of thing going on. And the worst thing someone can ask you is what's ‘wrong’ with him. You should really think how you would feel people asking you this as a parent its like you have already labelled him and its heart breaking every time you hear it. And another thing that makes things alot harder to deal with is when people point and talk about us when it is time for medication. these have to be given at a set time of day so no matter where we are they get done, its hard enough to do them day in day out with out people looking at you and judging you and what your doing, put your self in my shoes and then ask yourself would you like it if you were me???? i never want people to pitty me nor Fin but just respect what others go through, and realise how lucky you are for what you have. make the most of it, i know i sure do, i will share with you what i heard a lady say to her husband about me and Finley when we were at the hospital she said to him' just look how happy that little boy is, you can tell how loved he is, just look at the way his mummy looks at him' which made me break down in tears there on the spot but she couldnt have been more right!!!!!!!!!!!!!!!!!

 

But all said and done I have the most beautiful funny, happy cheeky little boy that has a smile that can melt your heart. I could not be more proud of him than I am, he is my everything, and every single day I know I'm blessed to still have him and I tell him just that, he is going to be someone amazing when he is older and do amazing things because why else would he have fought so hard to stay here. Finley Conor Roxburgh you mean everything to me you light up the nights sky, you make every day worth while, to wake up to your beautiful smile is truly the best way to start any day. You are going to be an amazing bright caring person and no matter what I will be here with you every single step of the way with our head held up high!!!!