Blondie

My beautiful daughter passed away on the 6th January.It was peaceful at our local children's and young people's hospice.Her funeral is on Thursday

Blondie, I'm so sorry, but I did not see this post until now, and I have removed its content. Please see our Discussion Group Guidelines regarding solicitation: Product promotion, solicitation and other forms of advertising are not permitted on the site, and such posts will be removed immediately, without prior warning.

Thankyou Marty,I will take a look at the book.I also know families who have two or more kids with the same illness as my daughter. Unfortunately at the hospice my daughter goes to for respite one poor couple have FOUR sons with Battens Disease.One child is far too much pain for any parent to endure,but even four is unimaginable what that poor couple go through each day. Christmas was hard as she barely noticed her presents and I opened them for her with her next to me.I so hate this illness with a passion.Why children are brought onto this earth to suffer so much is beyond me. My husband went to the shop today just for a loaf of bread.He was gone sometime.When he came back he said he found he had done something he had not done in years.He went to our local church and just sat there.He didn't know why or whether it was right or wrong.We were both brought up C of E as kids but lost our faith along the road of life I guess and now only go to church for weddings or christenings ect.I have been thinking of going myself but I don't know if this is through anger or help? Anyway no amount of praying can cure JHD.

Thankyou Ron. Every year that goes by it gets harder and harder what to buy for her present wise.I ask her what she would like but nothing comes back.I wrote all her class mates Christmas cards out for her this year,she used to love doing that herself.Every year I wonder if this is her last.

Growing up with JHD Here is a slideshow of the time we have spent together so far.It was a hard one to make looking back at old photos before the illness took it's hold of her.

Hello Lynn,sorry you have to be here at all.My daughter lost her daddy at the age of 10.He was just 35.We had split up when she was a baby but it was still very hard for her.She went on to develop the same deadly disease and now aged just 18 she has had the degenerative illness half her life already.Life is cruel and finding ways to get through some days is hard.But we have to though for our kids sake.I'm sure she is trying to be strong for you to.Have you thought about making a memory box together?

Just wanted to say how very sorry I am to learn of your cousins terrible accident.My deepest condolences.xxx

I'm not sure if you guys know Westlife in the USA but my daughter met these lovely lads on Wednesday.Make a Wish Foundation gave us a fantastic day out and a memory to last a life time.

The staff at my daughter's hospice did a staff work shop and came up with this choir.I think it's quite good actually.They are thinking of releasing it as a charity single!

Here is my daughter's 18th in London.I lost my usb cable for awhile but found it yesterday!!!

I know another lady who lost two sons exactly the same ages of your two precious boys.Of a different illness though to your boys,but the same illness killed them to.They would be late teens early twenties now I think.If you want me to put you in touch with her send me a PM.

Hi Nicholas.It must be awful.You have the need to find out what went wrong with your son,to be told a jab could of possibly saved him.Like you said the what if's and maybe's will drive you crazy now.I am no doctor but it does sound as if your son had extensive damage to his organs,the jab may have only bought him time,but you will never know.Hopefully something good will come out of his tragedy and in time that will bring you some peace.I have guilt to,but for other reasons concerning my daughters illness,and that is one of the hardest emotions to live with.It can eat you up.I have no answer for your guilty feelings but I am sure you did everything you possibly could to support your son and naturally we trust those in white coats to know best.Thinking of you and sending you strength.x

I came across this on another forum and thought I would share it here. THE SAILING SHIP AN ALLEGORY Imagine in your mind’s eye, if you can, a sailing ship; after a long break on dry land it is getting ready to once again enter into the freedom of the oceans. It reveals great beauty and strength, as well as joy, as it opens its snowy white sails and offers them to the morning breeze. You are one of those left behind at the shore; sadly you watch the ship’s departure until all you can see of it is a speck of white cloud on the horizon where the sea meets the sky. A mournful voice close by says: ‘Ah, it’s gone!’ During the coming days you keep on wondering to yourself: ‘Where did the ship go?’ Finally, you come to the conclusion that this does not really matter because you know that wherever the ship may be now, it will be still as beautiful as it ever was and its mast and hull will be just as strong as when it left your shore. At that, as if in a dream, you sense that a voice is calling to you from some distant shore: ‘It has arrived safely; it’s here!’ Death is similar. Nothing changes with physical death; we still remain the same one we always were. Our feelings and desire are unchanged; it’s just that we have shed our physical body like an overcoat that had worn out. Eternity is now; every moment we live in this world and all others is part of eternity. Any loss on the Earth plane is the spirit world’s gain. On the other side of the veil of consciousness each death in our world is always a happy event, a rebirth and a homecoming. We are eternal beings of light; there is no death and we cannot die. It’s just that sometimes we gather our experiences, so that we may learn from them and grow, in different worlds; that’s all. Roger Carswell

Thanks guys,just to type my thoughts sometimes helps the pain.Sunshine thanks for the PM's. Nicholas,I am sorry you have already lost your precious son and it shows your courage and strength in trying to help me with my grief.I really hope this place helps you. We are to meet her favourite boyband before seeing them in concert on Wednesday.This is thanks to the Make-a-Wish Foundation.She is very excited and it is nice to see her smile again.Makes me smile to.It does make you realize though that this is only happening because she is dying,we would never meet such a famous UK group otherwise.However I intend to enjoy the day as much as possible.We will be picked up from home by limo and taken to lunch.Then she is to have her makeup done before being taken to the venue to meet Westlife,then to watch the concert.A precious memory which will hopefully give me comfort when I lose her one day.

Thankyou all. I know I haven't been on for awhile.I guess I am trying to find my way through this nightmare.I suspected she had started with Juvenile Huntingtons disease aged just 9.It was 6 long years of hospital visits plus tests and aged just 15 she had the blood test to confirm it.As it's usually an adult disease they don't test until 18 unless enough 'evidence' is provided why the child should test.So this heavy weight has been round my neck 9 whole years and it does not get any easier,if anything it gets harder.She gets worse and worse.I already miss conversations with her about anything and everything as her speech is very poor now.Mentally she is like a young child some days,then the young adult can kick in and she cries so hard as she knows what is happening to her.Just heartbreaking as I have no power to stop it.This awful disease has not even finished with her yet,worse to come.I'm scared.I have pictures of my blonde haired blue eyed little girl when she was healthy and it just tears me apart what has become of her future.It's like I am dying with her and I can see no end to this pain.

Thankyou for your welcomes.I will pop in from time to time,promise

Hello everyone.I am new here and suffering from anticipatory grief.My 18 year old daughter has a degenerative illness which is taking her mental and physical capabilities over time.She became symptomatic with early stages aged just 9 years old after her father died of the same illness when she was 10.We had split up when she was a baby.It is so heartbreaking as a parent being able to do nothing but watch this cruel disease take her bit by bit.Very draining and tiring to.