Good morning everyone. Today my lovely son would be 29. We always spent his birthday together and he loved us getting him a cake ( even as an adult ). Family and close friends will get together tonight for a Chinese and some cake. And I know he will be there with us. I miss him beyond words. But I’m so privileged to have been his mum. Happy birthday son xx
sorry for the loss of your son.
hope that you all get through the birthday evening ok.
im doing something similar in Feb on my Soulmate Jaynes birthday
I’m sorry you have also lost a child and hope your son’s birthday remembrance is f full of love. Memories of previous birthdays are now so much more precious Xx
It’s such a heartbreaking time , god bless you and your family, I lost my son last June to bone marrow failure, his young son is what keeps me going, my heart is broken, it doesn’t get better for me, I hope it does for you , god bless xx
HI, we lost our beautiful son Luca last july on his 21st birthday ater spending 3 months in addenbrooks, home for 5 days, what hould of been a recovery. Luca was taken ill and taken back into hospital late afternoon that day, after getting him ready to go up to i.c.u he stopped breathing. It was totally unexpected and after autopsy and coroners report he died of giant cell myocarditis and possible sepsis. He had suffered with chrons.ulcerative colitus from age of 17. Resulting in p.s.c liver disease. He had a stent put through his neck so a shunt could be put through his liver for blood to flow as liver was no badly damaged that blood vessels had grown of liver to try to flow properly. caught lung diesase so we were in isolation for two weeks. Then had compl,ete bowel removal and stoma bag as no meds had ever worked for Luca in the four years, he had to give up work with his dad, was so fatiqued. had reg iron infusions, bloods done every two weeks etc. He developed two fractured vertabrae in hosp, due from steroids over the years and he was born dairy intolorant. He was also needing a liver transplant but that was going to come once he had recovered and settled. I am completly broken and cannot beleive its real, i desperatly yearn for Luca,crying all the time. He felt unwell on his 21st so i called the doc, his feet and hands were cold and he was sick. we sat holding hands on the sofa where i had made him up a bed as he could not get upstairs because of his fractured vertabrae. I remember his cold hands, he dozed on my shoulder while we waited for the ambulance. We were at the end of the bed about metre watching icu nurses and doctors fighting for his life for one hour and 50 mins. He never came back atall. Giant cell myocardititus is very very rare and only detected after death by tissue samples. At the time they thought his kidneys had failed. I am devestated and hate this life without Luca in it. Six months on is agony. The day i gave Luca life he lost it as well. I understand all of your heartache and pain deeply and the existance i now to to live. hug xx
I have never read a more tragic story (the wrong choice of word, can’t think of any other) than that of your son Luca. I am so very sorry. My thoughts are with you and my heart is aching for you.
Hello it’s so heartbreaking I’m sorry for you your family and your son , My son Christopher passed away in June 19 , he had a really bad form of bone marrow failure , he lost all three blood cells white , red , and platelets, only a handful of people suffer from this a year , the doctors didn’t really know what they were dealing with with , his consultant gave him an experimental treatment which ended up meaning he spent 5 months in Addenbrokes in isolation, then a few weeks in intensive care. He came out still very ill but getting on as best as he could, , his treatment didn’t work so next step was a full transplant , but two weeks before it was due he passed away leaving us heartbroken, his young 7year old son is finding it hard to understand, Chris was so brave he never asked or sort sympathy, , its hard to explain to people who have lost a child how you feel, even though you talk to other people it’s a very lonely journey, I cry every day I miss Chris so much it hurts, , I hope you find some peace , god bless you and your family,x
thankyou for your words ut i wish so much we were not in this club its dreadful.Today i was screaming out for Luca. Its just hurst so bad. our heart are destroyed and i hate living like this without Luca. hug to you xx
Its just not fair . We went into Addenbrooks beginning of june. i toook Luca to local a@e in bury for second time within two weeks as his body was swollen with fluid and he was struggling holding a sentance together getting out of breath. We waited in bury for 8 days before being transferred to Addenbrooks. I slept there many time next to him in a recliner chair as he had anxiety. I was there at crack of dawm to 9.ten at night. We were so excited to be going home as best they could get him like your Christopher but he was still il. We could well of passed eachother there. All of his consultants said Luca was the first patient they had lost to these diseases Addenbrooks and West Suffolk Hospital. This is still unbeleivable, today i had cried so much for him as i do every day. I miss We were friend as well as being him mu. He never said why me or complained. He had his fed up days at home but in end was desperate for stoma bag to have some sort of better life and we were all looking forward. It cruel they take our beautiful children from us . love to you all. xxx
Hello, yes we may have passed each other with out knowing, your son sounds so brave and a wonderful young man , god bless him and your family, Christopher was in bury hospital for a week before he went to Addenbrokes he was it hospital for five months last Year , he he became very depressed, as couldn’t go out of his room in case of infection, when he did come home we had to still go up to Addenbrokes 3 times a week for blood platelets and magnesium, it became our whole life , I would do anything for That to be part of our life’s again as it would mean Chris was still here , Our sons went through so much , them and so many other people didn’t deserve the awful illnesses they had ,or to lose their life’s so young , I cry for my son every day , he never leaves my mind for a second, I feel my arms around him as I held him in my arms when he passed away, it’s every hard on his young son too , he tells me how much he misses daddy , Addenbrokes were amazing when Chris was ill , and when he passed away they were so kind they gave us memory box’s with Chris hand print in a frame, and other wonderful things to remember Chris by , his consultant cried when we lost him we were hugging and crying together, even last sat the NICU held a memorial service for those who passed away on their unit, the doctors and nurses organised it they can us a candle with our loved ones name on , and flowers to plant in their memory, and took time to talk to us all , although Christopher never made it I feel Addenbrokes tried so hard and I will be for ever grateful that they tried , it will never stop the heartache , as you said it is the worst club any one would ever want to be part of , I would love to have known your son he sounds so brave, please keep in touch, we need to support each other as best as we can xxx
Your message brought tears to my eyes, that is so lovely of Addenbrooks to do that for you as heartbreaking as all this is. How old was your son?. We went back to Addenbrooks and met all of his three consultants liver and bowel, they were really good and upset it was a very emotional meet. They said the death of luca affected the two wards and the staff who knew us it was a great shock to all we were involved with. We have been to Bury twice and are awaiting another meet. We have had two lots of councelling but stopped they say i have posttraumatic stress and awating therapy for that. If need then we or i can attend councelling. No way did any one expect Luca to dieas ill as he was. They said if he had come back from his heart he would of need a heart transplant and been in intensive care for over nine months extremly ill. They said to be honest they do not think it would of worked as his organs all would have to of been in good order for heart to take and his liver certainly was not . His body was to ill inside for a new heart really to take. Devestation,pain, as you know is unbearable. Like you we would of been backwards and forwards to addenbrooks to , as said the next stage for him was a liver transplant. Life is so pointless for me, my husband is really good and is looking after me otherwise i would give up. I desperatly miss him, hearing him call me mum, his laughter,especially laughing at me doing or saying something silly. I miss our chats, he was a good person like your Christopher, never moaning or why me. Yes he got fed up but coped with it well. He only broke down once infront of me about a week before we left, like your son he really went through it for four years and was pulled to pieces especially in hosp last year. I loved taking him down to shops in a wheelchair to get our drinks and sometimes go outside in the sun. I am crying now. Where do you live?. Hug to you xxx
My cousin used to be a nursing sister at Addenbrooks, she would be Sister Winder in those days. This hospital has always had a good name.
Luca and i were always being told that we were in a good hospital on his stay. We were on the liver ward first ,intensive car, isolation and colostomy ward,which apparantly is the newest part of the hospital. Used to love taking him down to the shops in wheelchair for our drinks etc and to sometimes go outside in the sun. He was unable to walk because of fractured vertabrae and the fluid in his body from his liver realy made his legs swell. I keep remembering being outisde with Luca two days before being released drinking our iced coffees chatting, al full of hope for a better future, it has completly destroyed me. I have time when i think this is not real, this has not happened to us. I am desperate for Luca. xxxx
Hello , how are you doing today,? I watch a D.C. if Chris today , I felt an overwhelming feeling of sadness and devastation seeing him laughing and full of life , Chris was 38 when he passed away, he spent most of his time in Hemmatology and cancer wards , he was unable to make his own blood cells , so he had blood and platelets dielived from London 3times a week, I feel like I’m dealing with his passing on my own at home , everyone just gets on like before Chris was ill , my husband who isn’t Christopher’s father is no surport at all , I’m trying to keep going for my grandson and my other son who is completely devastated, the tears never seem to stop and the pain is overwhelming , I just sit on his bed and will him to come back even though I know he won’t, I have been unable to get part with any of Christopher s things, I hope they are both happy and free from pain , xxxx
Addenbrokes are an amazing hospital, it’s all about the wonderful staff, who go above and beyond to help as many people as they can, bless them all xxx
I am going through everything you say and experiance. I open his wardrobe door pull of his t.shirts towards me and cry into them, i want to smell him. Thankfully my husband is fantastic looking after me otherwise i would not be here ,he know that. I still say to him i dont want to be here without Luca and how are we going to live without him. I will Luca to come back, but we know its not going to happen.Luca was a great collector of marvel, japanese amimae books, figures, lego. His plan was to go to Japan. there are three rooms in our house of his colletions on shelves. All immaculate, boxes, labels on. He was a great gamer etc. Its so hard seeing it all and Luca is not here. His dad and i plan to go to japan,dont know when we will go for Luca. I go injto his ro0ms touching his things crying. Life is so meaningless. hug xxx
Your’s is such a touching story, I feel your pain as I read your posts.
I do hurt for you, your Chris was such a young man, my Stan was 84 years old and we had been married for 59 years. Of course, I miss him but when I read your’s and tonia’s posts I realise how very lucky were.
Love and Blessings,
I’m so sorry you lost Stan , it is devastating to lose some one you love so much , it’s so painful no matter how old they were , we have the same hurt , the longing to bring them back even just for a few minutes, just to hold them once more , my little Grandson has been my saviour, he has been so brave since his daddy died, we have Chris partly with us through his son , bless you xx
Yes its very sad for all loss. You never expect your child to go before you,its so hard living without Luca, i miss him so much. Its lovely you have a grandson from Chris, i would be clinging to him i know i would. I cling to my two nieces who come over there was a year difference between Luca and the two of them. I envy young people when i go out once a week with my husband Gary shopping looking at them and thinking it should be Luca he is missing so much of life, he was only just starting. Getting his disease at 16, missing out on going out he was to ill, his friend would come over to us. I miss hearing them all chatting,laughing. The feeling you have to hold them,hear them, its not fair to all the good ones. love to you all xx