|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 216
|
I can think of nowhere actually suitable on this site to put a post about my beautiful daughter, Helen. Some of you will recall that last year she was undergoing a barrage of test and treatment for what they thought was a very obscure neurological illness. Despite THREE different treatments which should have stopped this illness in its tracks and in fact had NO effect whatsoever, she continued to deteriorate. Earlier this year, she was..... eventually................. referred to another Neuro department; following further tests, and subject to confirmation of the type of it she has, we now know that she has a very rare form of Motor Neuron disease. She is 35, has a husband and son (10 in December).....................and has been told that she has at best three years but more likely only one year left; the paralysis has travelled from her feet to her neck and lips already, and she has difficulty talking and swallowing. Bless her, she continues to work, for as she says, she would go mad sitting at home thinking how ill she is and will inevitably become..........thank goodness the firm for which she works has been so wonderful to her, and is truly helpful and happy for her to use her brain to train their students even though physically almost everything else has virtually failed. I have known for over a month and have been unable to even think straight, never mind tell any but my very dearest friends ...............but many of you have asked periodically how she is, and I think it's time I told you. Helen is my eldest child, and her three brothers and I are completely devastated. Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
|
Oh Lylie, what devastating news. I have thought so often of you and of Helen and wondered so much how you both were after all you have been through.
How cruel life can be and your family have had more than your share of grief. I can find no words to say how sad I m for you all, but my heart goes out to you so much. Although I only 'know' you from the forum, your warmth and humanity come through so strongly and I know you will be there for Helen in every way and how she will need you, and her family too. Our children are so precious.
I'm thinking of you all so very much, thank you for having the courage to put this very difficult post up and know that we are here for you, although only able to offer thoughts and words.
Take care of yourself dear Lylie and your very courageous daughter,
Much love,
Lizx
xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
|
Lylie there are no words - just wanted to say you and your family are in my thoughts. Lean on to those dear friends you have to gain the strength you need. XX Ailsa
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
|
Lylie-what can I say. I can't imagine the pain you all must be going through Thank you for telling us.Helen and you and all your family will be so very much in my thoughts and prayers. Just devastating. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Dearest Lylie
As others have said, there are just no words to express our grief for you.
You are the most courageous, upbeat and wonderfully warm human being it is possible to meet and both Steve and I are priviledged to call you "friend".
Along with all your forum friends, we will ALWAYS be here for you, no matter what.
We will continue to hold you, your beautiful daughter and family in our prayers.
Love, as always
Jean
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Oh Lylie, my heart goes out to you!
I'm glad you were able to share this with us, although like others, words fail me.
Poor Helen, she is being so brave to carry on working , she will be in my prayers, as will your whole family.
How is little Morgan? This is just so unfair, you and your family have had so much to cope with.
Praying that you will all have the strength to get through this.
Lots of love and hugs, Doreen xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
|
Hi Lylie
I am here (you know that)
love to you all
Mary L XXXXXXXX
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 216 Location: Leicester, UK
|
Dear Lylie, Words are such small tools but I just wanted to say that Helen, you and all your family, are very much in my thoughts and prayers. Hugs, Ann "I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
|
I can't even begin to imagine how you and your family must feel Lylie. Will be thinking of you all.
Julie xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Lylie I remember reading about Helen in your much earlier posts and found it so hard to understand why in this day and age a diagnosis and treatment could not be offered. Such sad news and I can't begin to understand how you deal with it. I don't have any words that express my thoughts adequately but hope you will each find inner strength to pull you through the coming difficult months together in love, peace and harmony. May Helen's time be pain free so that she can experience family life with much joy and hope. Thinking of you all, Love Lyn x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
|
Dear Lylie,
I really don't know what to say.... So, so sorry to read such sad news, this must have been so difficult for you to share,
Sometimes there just are no words but jsut to say that we are here and we care, now and in times to come.
Thinking of you and all your precious ones and sending you hope and wishes for future strength and courage,
Thank you for sharing, please stay in touch, With much love and strong hugs from Liz xxxxx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 216
|
Thank you all, it's really lovely to come on here and realise that so many of you are with us in all this. Further shocking news came after I had posted the news of Helen: my eldest son , Colin, is back under investigation as he has lost LOTS of weight and has found more lumps, so the Hodgkins Lymphoma may have reared its ugly head again. He has always said he would have no more chemo....but maybe ............if they ever find something that works for me,too.......... we'll be able to share a drip?  (  Sorry, those that don't know me will think I am REALLY weird now, but I have to have a degree of black humour to get through each day ) The RA is having a ball too, so I'm mainly walking the dogs (VERY VERY slowly) and going back to bed for the day, just wish it was cooler...or even that it would RAIN!!!!!! love to all, Lxx Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Dear Lylie
Have just read your posts this evening, you are just a very strong person, to be admired.
No words can convey my thoughts for you and your children this evening, so deeply sad.
Sending my love Julia x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
|
Love and best wishes my friend as always.
Eleanor x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
|
Lylie, what can we say? I am so sorry for you and your family. Its taken so long for Helen to get a diagnosis, so much time trying to find answers. My heart aches for all off you and the pain you are going through right now. I hope Colin can get his treatment too. I really have no other words, but we are all here for you BARBARA
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
|
as if you havent got enough to deal with
love to you all
Mary L
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
|
Lylie no words just a genlte hug and say here for support,listening ear. lv melly cuddly cats make my world seem so much more fun
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
|
Hi Lylie Me dear . ofton think about you . i will e.mail you soon to cheer you up Love Chrissy chockers The chocolate eating housewife ...The washer woman .....naughty lady
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
|
Lylie  It's amazing how humour can be found in any situation. I think it can literally save a persons sanity. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Dearest Lylie, I wish I could think of something to say that would ease your pain, but there are no words. Your beautiful Helen obviously shares your bravery, and like yourself, must be a very special person. The news must have been devastating for you all, and I can`t imagine how you deal with something like that. And now Colin too, has demons to face. I can only assure you all of my thoughts and my prayers as you all go through this awful time. Take care, Kathleen x
|
|
|
|
|
|
|
