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My storey, this may look long to read but I wanted to write this the way it happened  to make people aware that this could happen to any healthy person like it has to my beautiful grandson Aaron Jayden and how becoming a bone marrow donor could SAVE the LIFE of a person. 

It was the beginning of December 2015 and my healthy and happy 3yr old grandson Aaron Jayden had happily been to nursery for the day. After we picked him up we headed into town to go xmas shopping their was  his mam and my self his nana with him , as any excited 3yr old would be running riot round the shops as the excitement built up in him as it was count down till Santa came  and surrounded by xmas toys stocked up in the high-street stores was just a care free grotto to him, happy as  any boy would be running round with not a care in the world getting the odd comment of the xmas shopper  asking if he'd  been good and then asking have you been in the wars as he always had a bruise some were and was always coming out in bruises  a proper ruff and tuff boy I`d say but apart from the odd cough & cold he was in good health for any 3yr old boy. we headed to maccies as a treat before going home, when we got home after our xmas shopping trip it was bath time and then bed for a tired boy or should I say NOT SO :-( for little Aaron Jayden (I'm saying little Aaron for those that don't no us his dad is also called Aaron too ) so when  getting bathed Justine his mum noticed a rather large bruise on the side of his hip rather blue and purple not just a normal bruise. she phoned me to ask me while we were shopping had he knocked into anything or fallen to of caused this but he hadn't that I new of so she said I'm going to take him to casualty to get it checked as its a weird bruise with like a dot in the middle and I gave a little giggle  thinking going to a emergency dept with a fit happy  3yr old as he had a bruise.

I said their gonna like you Justine, wasting there time over a bruise  but the young mums of today do things way different to what we did in our days and I just said to my self at least she a caring devoted mam  id be complaining if she didn't give a hoot but no  thank goodness she did as upon arrival at the a&e dept. it was getting late and Aaron  was getting restless and tired soon  a doctor appeared  and after examining Aaron`s bruise  asked how he had been in recent weeks and how did he get bruise for which she replied he had just come out with it he never told me he had done it but surely for that size he would of cried  she was also asked about old bruise that was scattered around his body which she told him was a regular thing as he always had either a bruised leg arm or even black eyes he has no stop in him ruff and tumble he seemed to bruise very easy.

After  the examination  he said he wanted to take some blood from him  to send to be tested but wanted him to stay in hosp for night so they could keep an eye on him. on the paediatric ward waiting for them to take blood he started to get a rash all over his face and neck like little dots under the skin so they done bloods and let them sleep till morning when docs were in and results were back.

The doctor came to talk to them and a nurse took aaron to a play room so docs could speak privately with them, Justine thought whats going on why could aaron not listen?? the doctor sat them down and said they needed to go to Newcastle rvi asap, Aarons bloodstation was seriously low he may have ..... leukaemia  were not to sure yet as Carlisle hosp cant test this so that's why were sending you to Newcastle who specialise in this.

I couldn't even describe the devastation and look as my son knocked me up out of bed  to go with him and Justine to the RVI there and then . Now when I  look back at me saying to Justine  (a& e with a bruise ) gosh call it a mothers instinct or what you like but  little Aaron was been admitted  for suspected leukaemia & that thank god Justine had took him  to A&E that night its not worth even thinking  about what if she hadn't. The world around us was just crumbling how could it be that, why him, all sort`s of things were running through all our heads. what with tears down our faces as well as trying to be ok for Aaron to see it was just a total shock to us all. he was fine at nursery this time yesterday morning now were on way to this!

The next few days were a rush and blur docs, consultants nurses in and out the room, we were admitted onto ward 4 the teenage cancer unit for children which is a fantastic ward  every one is so nice and helpful but yet so very sad to see all the suffering children  that were  going through treatment etc but  were still managing to smile so brave is a understatement. Lots of test`s & examination`s started  coming to little Aaron over the next few weeks and we were told it wasn't leukaemia which was a huge relief but would of been treatable but it was a rare disease (aplastic anaemia) that they didn't have a cure for as of yet but was treatable.

If they could find a underling cause that caused this to begin with like another disease  but they said 9 out of 10 they never find out what has caused it, it just happens to some people. so it was going to be a long haul of tests and procedure`s a head till all the tests could be done and we  ended up been in hospital over the xmas period Aaron didn't mind though he met Santa on Christmas day and got lots of toys and sweets.

After xmas and lots of platelet`s and blood transfusion`s to keep little Aaron  topped up as well as lot`s more tests and a few trips to the operating theatre to get a Hickman line put in to make it easier to get and give bloods and medicines. we were told that little Aaron would need a full bone marrow transplant sooner rather than later so he was tested for his bone marrow typing to start looking for a possible donor. thankfully he was a common type so would have a good match. 

But then More tests came back to say they had found a underlining disease Dyskeratosis congenita a very rare disease which affects 1 person in a million now we know this is what has caused the Aplastic anemia. but their is no cure for this Dyskeratosis congenita but we were told  after the bone marrow transplant had been done  hopefully the Aplastic Anaemia will not return. It's all very confusing and we don't know much about the Dyskeratosis congenita, so we will go to London to see a professor, whom specialiser's in this disease  worldwide , and we would take things from their on . 

A donor to our excitement was found,  for little Aaron  and he is going into hospital on the 9th may 2016, for the full bone marrow transplant. At present, little Aaron is in and out of hospital, getting prepared for the big day having all his main organs checked, to make sure that he is ok to go a head with the operation. Also needing a new Hickman line as he had a bad infection in the last one for which an infection to him can be life threatening with this illness so had this changed immediately.

He will get intense chemo therapy for 8days, before the transplant and then will remain in the `bubble` isolation, for a minimum of 8weeks  to ???. It's not easy to say how long until he starts to build his immune  system back up . With only his mama, dad ,and myself (nana)  and his grandma allowed in to see him for the 1st few week's of transplant been done .

As things progress, I will keep you up dated as we go through all this, it`s going to be a long haul, but so far this little man, has been one of the bravest little soldiers, I've ever met, nothing phases him ,or gets him down, he most certainly is,a one in a million for us, for whom I love to bits so, so much  as with every thing he's been through & still going through, never complains , just gets on with it , he has the doctors and nurses on their toes in the hospital as he runs riot in the ward, on the fire engine and bikes etc.  To look at him you`d think he's just a normal ,healthy, and hyper , 3 year old boy, with not a care in the world but really he's a very (  ill  little  boy  ).

If my fundraising and doing this campaign, makes people aware of  Aplastic Anaemia ,and gets people to sign up  on the donor list ,id be happy ,as If I get I out of a hundred people, then it could be a ( LIFE SAVING ACTION ) for 1 person, the same as  the donor will be for my little man.  I'm going to be holding lots of fundraising things over the next few months, details will be added soon with dates ,so any help or contributions to this would be gratefully received. I will add updates to little Aarons progress ,as he goes through the next few very hard months, thanks for taking time to read ,and become aware of Aplastic Anaemia and how it can happen to any one ,at any time ,healthy or not. chel xxxx