Feedback

Any feedback left via this website may be used below.

This is a selection of the tremendous amount of messages we have received from around the world.

61 comments on “Feedback
  1. Bridget Sibagu says:

    i only saw madisons story today and it touched me so much..im 22 of age an i have loss a close cousin of mine 3 year ago she lost her fight against brian cancer.but it still affects me,i miss her so much everyday.i jst want to thank u for sharing your story with us an to show us tht one can get over something like this.i hve neva seen sumone with so much strenght an courage to write everything down tht happend on each day.i would hve broken down with every word i wrote.i dnt knw maddie personally bt with wht i can sense is tht she seems like a strong person an tht she was really loved by her family.

  2. Julie says:

    First I want to say how sorry for your loss of such a beautiful little girl! I am a grandmother of our only beautiful grandson who is 14 months old and diagnosed with GBM with brain stem like your Maddie. Also like her we noticed his clinginess and low grade temp. Within one week were told he had hand foot mouth a normal child’s virus then when he quit walking and started throwing up they said possible viral meningitis to tumor and surgery and the no cure speech! Of course like Maddie we are told he is to young for radiation. We are all shocked and scared and your blog was the only one I found that had a young GBM. It helps a little to see maybe what to expect. Thank you for keeping your website active.

    Julie USA

  3. Tina says:

    I just wanted to send my prayers and support to you and Georgia. I came across Maddie’s site yesterday and read the whole thing… I then realized that it was the 12th of April and immediately sent another prayer your way. I know that the pain is still there and questions still remain but I hope that you and Georgia have some moments of happiness and peace. You two are such strong and wonderful people. Maddie was blessed to have you as parents. I know she is enjoying herself up in Heaven and will be waiting for the two of you to be together again. God never left her side and he will never leave yours, either. Please try and take care of yourself, I know your heart is weary and the weight on your shoulders is heavy. I am so sorry for your loss and I know words can only do so much. I hope you have a blessed day. I will continue to keep you and Georgia in my thoughts and prayers.

  4. Shelley Wickham says:

    Hi Neil and Georgia,

    Im not sure if you remember me but I nursed beautiful Maddie at RCH on 6west. It was during my grad year (2002)with kate Pallot who had a little girl Millie. I also came to your house one day to drop off some medication from the hospital. I attended Maddies funeral where I was pregnant and ended up having a little girl April 2003 also believe it or not named Madison. I had always loved that name and was so pleased to call her that. I still think of Maddie but hadnt looked up her site in a long time and thought it so special to find it was still up and being added too. I still remember her pronouncing her website; dub dub dub dot winchy so cute!
    Im still at the childrens though not as much and there has been a big change over of staff but still alot of old faces. I just wanted to let you know that I think of you guys and your beautiful daughter often and she really touched all of us on the ward and it still feels like yesterday that I was walking into her room and seeing her cute little smile. Take care and feel free to contact me.
    Lots of love, Shelley

  5. Summer says:

    Hi,

    I randomly came across your site today…and I just want to say that your daughter’s bravery, as well as yours, has truly touched me. I’m sure your lovely little girl has touched SO many others–what an amazing purpose she brought to this world in such a short time span. I hope you’re both doing well–I’ll keep you in my prayers

  6. Joey says:

    I have to say this story is one of the most touching ones I’ve come across. I’ve just read Maddie’s story, and although this post may be years after her death, I know she will be remembered by everyone who read this – even if that person doesn’t know you or Maddie. My sister has GBM too, and her left side is beginning to paralyse. When I saw Maddie’s pictures, I felt like my heart was breaking altogether. I thank you for sparing such precious time to write this for everyone, even though you still must be deeply devastated. I know Maddie is in heaven, looking down on you, and thanking you for the wonderful time she’s had, despite the illness. May your family have happiness in the future and remember, what ever happens, keep smiling. God bless you all!

    Joey W.

  7. Laura in Chicago says:

    Thank you for sharing your beautiful little girl with those who find her site. I love those precious pictures! My mom was diagnosed with GBM about 5 months ago. So far she is doing good and we are making the most of every moment, as you did with little Maddie. That is a great lesson I take away from reading her story – to enjoy the time we have TODAY, right now, to cherish every moment. It is so evident in Maddie’s pictures that she was so loved and cared for and even with her devastating illness, she had FUN and happiness. Laura in Chicago

  8. Mina says:

    Hi, I wanted to tell you how admirative i feel when reading what you’ve been through.
    My 3 years old daughter although suffers from glioblastoma. We are having very hard times.. I am very touched when watching your pictures. I hope your angel feels better where she is now.
    I’m sending you lots of love and best regards

  9. Robyn Warriner says:

    : Hi Georgia,
    You may not remember me, but I worked at an Insurance brokers in melb who had a MV scheme with your company MCMS.
    I found some old paper work in a box yesterday that had your name and this website. Instantly I realised who you were and wondered how you were doing after all this time.
    You are such an inspiration to so many and the fact you still continue to update Maddies site and express your feelings is amazing and also so helpful for others in a similar situation. I have often wondered how I could make contact just to say hi and see how you are.. I still remember our phone call and the day you told me about Maddie, I felt crushed, I can never begin to imagine how you and your partner felt and especially having to explain to people like me.
    Hope you are hanging in there.

    Love Robyn

  10. Sue Taylor says:

    You and Maddie are often in my thoughts, and while I can only imagine how hard it must be to go on some days, hope that you are both OK.
    Maddie was a gorgeous little girl with great courage, humour and a beautiful smile and those memories stay with me take care
    Sue (OT)

  11. Michele says:

    Just want you to know your maddie was and still is a beautiful little girl..sometimes i think if you never knew love you wouldn’t know what your missing…i lost loved ones very early in life and my heart goes out to you both..but you know what love is and in my heart i hope and pray that someday we will all be together with the ones that we loved and still do….thinking of you and hoping that life will be good for you both from now on

  12. Lisa says:

    Neil and Georgia, i looked after Maddie as a nursing student in her last year…….! Maddie and you guys taught me so much about inspiration, toughness, love and happiness that i have carried with me so far through my nursing career. I often think of Maddie when i’m in certain situations and just that small amout of contact with her has helped me get through many tough and sad situations!

  13. Sarah Clark says:

    I found your experiences with your gorgeous daughter Maddie so emotional. I very sad for your loss.

    My daughter has Hydrocephalus and has a VP Shunt

  14. Laurie Checketts says:

    Hi Georgia & Neil,

    I used to work with Georgia at McMillan Shakespeare back in 2002.

    Just wanted to let you know that I often think of Maddie and say a prayer for her. Although I never had the chance of meeting her it seems I know her from your wonderful website.

    Every now and then I come and have a look to see that beautiful smile of hers that comes beaming across.

    I hope that you are both well and I am sure that your little ray of sunshine is always around you.

    Take Care.

    Laurie

  15. Heather says:

    Hello Neil & Georgia,

    I’m not sure if you remember me from early working Telco days. I have thought so many times about your beautiful Maddie and I can’t possibly imagine the hurt you obviously still carry.
    Since I had my boys, and becoming a mum – I can only offer my warm very best wishes especially at this time of year. I know that Maddie is happy and watching over you and probably playing little pranks…………. And giggling out loud with you….. Take care, both of you. Love Heather & gang

  16. Marcello Iemma says:

    I would just like to let you know that I do think about you both and the pain you feel. I check the site every year about this time.
    I know Maddie would have been close in age to Sarah and I can only imagine the struggle to cope with the pain. She was an Angel on earth and I believe is an Angel in heaven.
    My family’s prayers are with you both.

  17. Renee Klompien says:

    I have done a semester long project on your website, and the life of your little girl for one my classes for nursing school. You’re story is so inspiring. Know that you are in my thoughts and prayers.

    Renee, Great Falls, Montana

  18. Linda Huffman, Arizona USA says:

    Hello, I’ve read just a couple of the feedbacks that you have received. And, like most, I too have stumbled onto your daughter’s story. I was looking at information on astrocytomas, my Dad was diagnosed in Jan 2003 with GBM4 and passed away in July 2003.

    I am so sorry for your loss

  19. Paula Bass says:

    God Bless for finding the strength to share your heartbreaking story. I to came upon this story in looking for answers to give my son who is 15 and he is loosing his dad to Gliobastoma he’s 43, it’s amazing to find how quickly your world can become upside down. Thank you for sharing becasue it gives information that I wouldn’t have otherwise gotten. I pray for your healing which I’m sure will be a life time.

    God Bless Paula

  20. Suzi Gradillas says:

    Let me say that I am writing you with a river a tears. The story of your “angel” Maddie brought back all the bad memories for me about my mother. My mother passed away from this monster on April 2, 2006, can’t believe it will be a year. Sometimes it seems longer and sometimes like it just happened yesterday. I am still angry as to why a woman who was so full of life and healthy had to get this cancer. You will be in my thoughts and prayers and I know that mama is with Maddie and that they are the most beautiful angels in heaven. It feels good to let out my feelings to someone that knows exactly what I am feeling. I know it is almost a year that mama died but it seems like all those feelings are resurfacing. It won’t get easier because I miss her more each day. Thank you for Maddie’s story; she and mama will continue to be my inspiration for getting through each day.

    Best regards, Suzi

  21. Shelley Duggan says:

    Hi Neil and Georgia,
    Im the Shelley that looked after Maddie at Sandringham Nursery School.
    I pop into the site every month or so to have a look and I wanted to let you know that I (well we, Laura and I still catch up regularly, and we were just talking about Maddie last week) think of you guys regularly.
    I often reflect on Maddie and her times with us at child care and I thought I would drop you an email to let you know that I still think of you guys as well.
    Take care, lots of love always
    Shelley

  22. John Shippole says:

    I was very touched by your web site. My uncle of 60 yrs old died back in 2002 of the same type of brain cancer as your daughter. I was very close to him and still think of him often. He died too young and was such a gentle good hearted person. I dont know why god takes such precious people in our lives but I would like to wish you and your husband the best in the future and pray for our lost loved ones.

    John

  23. Lani says:

    I too lost a loved one to GBM, my father, just recently Feb 3, 2007. I cant help myself to be sitting here on the internet searching for the what ifs and only ifs, like I can bring him back. I know in my heart that I did everything I could for him, I just want him back, in the sort of way you want Maddie back.

    Thank you for shedding a pale light upon my journey.

    Lani

  24. Sharon says:

    I found your site while looking for information on GBM. A member of my family was diagnosed today with stage 4 GBM. I am so moved by your story and by your courage for sharing it. I am a mother of a two year old boy, and my heart aches for you. It was so painful merely to read your story that I have no comprehension of how difficult it must be to live it. Thank you for sharing Maddie’s life and her death.

  25. Leanne T says:

    I read your Maddie’s story tonight. It was raw, beautiful, and I thank you for having the courage to write it. My uncle was diagnosed with this same type of cancer last week. He has been sent home with hospice (home health care) for his last days. From your story, I recognize the same , end time symptoms and expect his day of crossing over will come sooner than predicted. I thank you for your honesty. I thank you from the bottom of my heart.

  26. Shelly A. Becerra says:

    What a courageous battle you have been through. I was not looking for such a heart breaking story when I came upon Maddies story. I was looking for information because a friend of mine has be diagnosed with GBM and I wanted to educate myself on what he is facing. Thank you for being brave enough to share what you have endured. It has not only touched me deeply, but educated me incredibly. All that I read before your site has been very discouraging. The survival rate is not encouraging and I will make it a goal to never take a second of my life for granted. I will look at my friends life so differently. I will also be grateful for the goofy things my 20 year old does and feel blessed when he makes me crazy. Thank you for sharing your life with a world of strangers. Your little girl has touched this stranger, and your story has touched my heart.

    God Bless you both,,,,,,and God Bless little Maddie

    Shelly

  27. Nancy Mattingly says:

    Thank you so much for your story, one of my friends was diagnosed last year with the same diagnosis as Maddie. I am so sorry for your loss, but know that in telling Maddies story, you bring comfort to many of us trying to navigate all the information and emotions involved. May you have peace and feel surrounded by love of your friends and family

  28. Shannon Rziha says:

    Hi there. I know your website about Maddie was done a few years ago, but I’m thankful for the internet and thankful her story is still on the web. I just spent the last 2 hours reading her story and also browsing other information on your webpage.
    I originally did a search for “glioblastoma” and found your website. I live in the United States. First let me tell you how deeply sorry I am to read of the loss of your little girl….her story was very touching and she was a really good little fighter with everything she had to go through.
    This may sound insignificant compared to what you’ve gone through, but I at least wanted to let you know that my dad was diagnosed with a brain tumor last week (he’s 55 years old), and they did a biopsy two days ago to find it was a stage 4 glioblastoma…..they’ve only given him about 11 weeks to live. It came on very suddenly, and is extremely aggressive and growing very raipdly. He’s going to try to have radiation and chemo but the doctors told us it would only maybe buy him a couple weeks of time.
    Another commonality from your story. My daughter was diagnosed with hydrocephalus (too much fluid on the brain) when she was only 2 weeks old, and had to have a VP shunt put in place. What we thought was a routine 2 week check up turned out to be a 3 day visit in ICU.
    I just wanted to say thank you for your website. It has some really great information and Maddie’s story is very touching. I will say a prayer for your entire family. Thanks again. 🙂

    God bless
    Shannon
    Tulsa, Oklahoma, USA

  29. Katie Taylor says:

    I am very sorry about the lost of your daughter. I have learned in the past two months what Glioblastoma Meultiforme is and what it can do. I have some friends that lost their 5 month daughter June 3rd, 2006 to it. My prayers and thoughts are with you

  30. Connie says:

    OMG, my heart goes out to you guys : (

    I came across your site. Touched me. Such a short life but such wonderful loving parents to take care of her. Some kids are so unloved for years and years and Maddie got to feel SO much love in such a short time. Makes me appreciate what I have, makes you think, you never know what is in the cards. May God help you through these years.. and know you will see her again in heaven. God Bless! Connie

  31. Kim Rock says:

    Hi,
    I just want to say I pray for you both and I was so upset reading your story and looking at your beautiful daughter.
    God bless you and may you find the strength to carry on each day.
    Kind Regards
    Kim

  32. Stacy Harman says:

    Hello – I just wanted to email you and let you know that I stumbled on Maddie’s website this morning. My good friend died last week of GBM and it seems I’m on the internet all the time trying to find ways to help her husband (also my good friend) cope with this devastating loss. She left behind a three-month-old daughter as well.

    I have a two-year-old baby girl named Kaylynn – she’s our first and only right now and she means so much to us. I kept picturing Kaylynn as I read Maddie’s story and couldn’t imagine how difficult it really was for you. Maddie sounds like a true hero, and she is inspiring to me!

    I’m so sorry for your loss. Thank you for sharing her story with everyone. It helps to read about other families who have gone through this.

    Love,

    Stacy Harman
    Indiana, USA

  33. Robert H Schleinig (Schnig) says:

    I have a dear friend recently diagnosed with GBM and was browsing, researching and stumbled upon your site. Thank you for sharing so much.

  34. Rose Eastham says:

    I came across Maddie’s site today and I’m sure much the same as most people i had a good cry! What a beautiful daughter you had, she really does look like such a sweetie in those photos. I know that nothing anyone says will make anything feel better, even a few years on. I have just been diagnosed with lymphoma, fortunately stage 1, and i found Maddie’s story inspirational. To keep smiling through such pain is something kids seem to do so well where adults fall and lapse into self-pity, youngsters pick themselves up and keep going. Before I start waffling, I just wanted to say thank-you for your website, and I will be thinking of you and your family still. There is no reason for some things happening, a lot of the world doesnt make sense at times. Take care,

    Rose x

  35. Christy & Raymond says:

    my mother in law was diagnosed in march this year and we have been through so much with her. I can’t imagine how you must feel as being your own child and so young. I feel that your site is great and would help alot of people going through the something today. I would like to know how you got through all the ups and downs as my mother in-law was at the point they thought she would not be here much longer with us, and she got very sick and couldn’t move or function and did not remember things. today she is able to move and walk alot better and is trying to remember things. I have two young children and we have told them what is going on all the way through but when there grandma was at a very low point during this she said some not nice things and can’t remember them but our children do. I though maybe you could give me some advice on this. Today they still don’t know or have much information easily available.

    You both must be incredible and strong people to have gone through such a stage inyourlives and made this web site as well to help other people all my deepest regards.

  36. Linzi Lipinski says:

    I am sorry about your little one. My name is Linzi. I am only 18 but I am steel so sorry. Every since I was 11 I wanted to do more. My best bud dyed from cancer. I now work with young kids who have cancer art and talk to them. I am a help worker at St. Jude. I love it more then words can say. I hope days get better for you each day I know it has to be hard. Even I cry thinking about it.

  37. Kristin Cowger says:

    I came across your daughters web site while looking for more information on hydrocephalus and vp shunts.

    Our daughter, Lea, was diagnosed with hydrocephalus at 2 wks of age. We rushed her to Devos Childrens Hospital in Grand Rapids, Michigan USA.
    It was so difficult to watch the anesthesiologist take her thru the operating room doors. Just one image I will never forget about this ongoing situation.

    Even though our daughter is doing very well at 8 months old, I see what you and your family endured and think to myself, I’m glad we only have to deal with hydrocephalus. I had to go thru every one of the photo galleries you posted. I will no longer feel like I am taking too many pictures of our Lea. Your daughter was absolutely beautiful. Our prayers will go out to you and your family.

    Thank you for sharing your experience, it puts so many issues into perspective.

  38. Joe Vitali says:

    I was searching for info about VP shunts (my wife has one that is having problems).

    I read your story about your beautiful little Maddie and my heart goes out to you.

    You are so brave for sharing this experience.

    I hope you have found some peace and happiness, you deserve it.

    God Bless You and Maddie:

    Joe Vitali, Tulsa Oklahoma, USA

  39. Lori Beth says:

    This is a truly incredible story. It really hits home because i just found out my brother was diagnosed with GBM 4 he is 39 and a researcher of brain cancer – can you believe it. You have touched my heart. Thank you for being brave enough to write.

  40. Janice Feilden says:

    I know you haven’t updated Maddie’s web site for a while, but I just wanted to let you know that you are still often in my thoughts and I still like to look at the wonderful photographs of a very special little girl.

    I lost my darling husband Tony to GBM in July 2001, and is still feels like yesterday, though I try to celebrate his life and the life we had together rather than the bad times, but it is not always easy, especially at birthdays, which I know you have just gone through.

    With very best wishes.

    Janice Feilden

  41. Anne Dury says:

    Hello Maddie’s mummy and daddy.

    I have just stumbled upon your very moving tribute on your webpage to your daughter Maddie. I have just completed a website for my little girl Rachel who also lost her life to a glioblastoma multiforme brain tumour on 30 March 2004 and that is how I came to find your site. My little girl was a bit older than Maddie – she was 8 years old but I felt and fully understood every word you had written in your tribute. All the fears and vulnerability you expressed I could truly understand and empathise with. That is exactly how we felt, and are still feeling as we have just completed our first year.
    Thank you so much for your words, it helps us to know we are not going mad as we so often feel we are.
    I hope you continue to find the strength to allow you to continue as best you can. All I know is that “carrying on” without my little girl is the hardest thing I have ever had to do.
    God bless

  42. Dan Hubik says:

    A wonderful website.
    Thanks for sharing your very personal story. It is an invaluable resource for sufferers of GBM and carers of people with GBM, and very touching.

    Dan

  43. Kathryn Needham says:

    hi my name is kathryn and i came across your site and read about your wonderful daughter. i was diagnosed with gbm grade 4 last year not even a month after i moved into my first apartment. fortunately in my case they were able to resect it all and it was encapsulated. i am a patient at st.jude childtens research hospital in memphis tennessee. i finished with my treatment about a month ago and am doing great. i am in college and working and going on with my life. your daughter was absolutely beautiful and extremely strong. this is a horrible disease that i only pray that one day there will be a cure for it so that no one else has to suffer the way that we have.

    love and prayers
    kathryn

  44. Jocelyn Craft says:

    I enjoyed so much reading about your lovely daughter. I had put in GBM in the yahoo search engine and came up with your site. I have lost a father to GBM (’94) and now..we are days away from finding out if my husband’s fight with AA2/3 has progressed to truly being GBM. He is a four and a half year survivor..and is fighting with everything he has…my heart just goes out to everyone fighting this disease…and for the caregivers that are doing it/done it.
    You gave your daughter a lovely site ..what a loving tribute to a beautiful little girl. I pray one day..they will figure out what will stop this horrible cancer.

    Jocelyn ( Texas, USA)

  45. Michelle Minaga says:

    Hi my name is Michelle. I work at Boulder Community Hospital in Colorado. I was working on a research project about Shunts and was drawn to your story. I am surgical scrub nurse and work mostly in neurosurgery. After reading your story I cried for several hours. It truly touched me. I don’t really know what happens to patients and there families after surgery. Your story provided alot of insight for me. Your strength through the illness of your daughter is truly miraculous. I also have a daughter name Madison. I couldn’t imagine being able to cope the way you have if anything ever happened to my daughter. I am so sorry for your loss. I just felt compelled to express my sorrow for your family.

    Sincerely

    Michelle

  46. Sandi Richard-Mohamed says:

    Just wanted to let you know that I am thinking of you both during this difficult time. From the moment I was introduced to your web site through Marg Strangmans web site I became one of your fateful prayer warriors as you traveled your journey with Maddie. On December 12, 2002 my mother lost her brave battle against the same terrible beast. The memories are as vivid as they were 2 years ago. It is a difficult journey to march on without the one we love so deeply. Just know that across the waters many miles away you have someone keeping you both in her thoughts and prayers.

    Sandi Richard-Mohamed
    The University of Western Ontario
    London, Ontario Canada

  47. Jason Petrishin says:

    Neil,

    Just wanted to say thank-you for sharing your story. This must truly be a complete and utter devestation. I was poking around the web looking for some info on a school paper, hoping to find a caring parent who took time to document treatment through what must have been just the most awful moments of one’s life. Thank You for sharing God Bless, and may your daughter find peace away from this horrible illness.

    Stay Strong,
    Jason Petrishin

  48. Sanjay Wadhwani says:

    Beautiful Website.

    God has blessed you becase he let this beautiful girl come into you life even if it was only for a short while.

    Stay strong, she will always remain in your heart.

    A well wisher

  49. David Gutglass says:

    I am very sorry for the loss of your daughter. I happened upon this website while looking for pictures for a lecture for a national pediatric conference.

    I am writing you to ask permission to show one of the pictures of Maddie posted on your website at a national meeting for pediatrics and neurosurgery in San Francisco, California USA . The photo would be used to show other physicians what an EVD looks like on a patient. The lecture is on shunt infections.

    Sincerely,

    David J. Gutglass MD
    Director Pediatric Emergency Medicine Fellowship
    Division of Emergency Medicine
    Children’s Hospital and Health Center San DIego
    Clinical Assistant Professor UCSD

  50. Colin Mac says:

    Thank you for Maddie’s story.

    I do hope that your sorrow and pain is waning and that you can continue your lives with the fond memories and love of Maddie.
    Maddie would want you to find happiness again.
    Colin, age 63.

  51. Jessica Harrip says:

    I have just been on Maddies website, as my sister works with Georgia, and I wanted to email you and let you know that you and Georgia are the most loving and brave parents that I have come across.
    After reading “My story” all I could think was she was so lucky to have parents like you. It is clear from the diary that you wrote that you and Georgia had nothing but 100% love for Maddie.
    I think that you have done a wonderful thing in doing a website in her memory and I wish you both all the best for your future cause god knows you deserve it.

  52. Colin & Suzanne says:

    I’m sorry to hear of the loss of little Maddie. The site gave me alot of insight into brain tumors and the medical work involved. however i’m not sure if it’s a positive site especially for families who are believing and hoping their loved one can beat the tumor. Only today i was told that my brother Eric, who is 26, has found out that his brain tumor has grown back after 23 years of being under control. He also received extensive treatment at the Royal childrens hospital in Melb, also having the shunt placed inside the brain. All day i’ve been telling myself it’s going to be ok..but after reading Maddies story i’m left with a emptiness feeling in my heart! I know they’re only telling their side, and im not angry. I shouldnt have read it, maybe state that it’s a sad story in future.

  53. Tammy Madden says:

    Hello. My name is Tammy Madden and I just read your precious daughter’s story. I am so sure she is an angel in Heaven right now. Her story just broke my hear as you see we came so close to loosing our precious angel. Here is her story:

    http://www.babiesonline.com/babies/m/miraclemegan

    We will be in prayer for your family,

    The Madden’s

  54. Rachel Kimbro says:

    Hello my name is Rachael Kimbro and I live in Texas. My son also is suffering from a GBM. He was 7 years old when diagnosed of March 2002. I came across the website for Maddie and I couldn’t go into it a first. I just sat there and stared at her picture while tears streamed down my face. Not only was I crying because of the precious, innocent life that had been lost, I guess I was crying that some day someone would be looking at my sons picture and crying to for their child and mine. Why can’t they find a cure? God is in control is my motto!! We may have cancer, but cancer doesn’t have me….that is our first and final statement when asked about Kennedy.

    This webpage is the best by far that I have seen. I was looking for a pedi case like my sons who actually had the same type of tumor. I came across Maddie’s through a site and through a search engine and at this time I cannot remember.

    Bless you all. I guess I am rambling and I feel very overwhelmed at this time of writing this, and I apologize because of this. Why I have written is because I wanted to let you know thank you for this site, and yes if it is ok, I would like to visit it regularly, and maybe get some feedback also from you personally, if that is not asking to much.

    Thank you again,
    Rachael

  55. Neil Winch says:

    As you will see by my Email address the reason for my initial search of the internet was purely to see if there was any other person out there called Neil Winch.Well I certainly was not prepared for Maddie’s web site and after reading through your experience, I salute your bravery and obvious deep sorrow at what passed and I can only say it made me stop,sit quietly and reflect on my blessings as a father of 3 (Terri,Cavin and Stacey)who have enjoyed nothing but good health their entire lives and begs the question “Why do some have to suffer so”.

    I am sure you have asked this question often and I am sure you have found many reasons that could have had some link, however,ultimately, I am sure you feel now just as close to Maddie as when you were all together and you have surely done personal soul searching which in itself will make you all richer in personal understanding.

    Best Regards

    Neil, Karen and kids Winch

  56. Fiona Clare says:

    I came across Maddie’s website while doing a bit of research on nasogastric tubes. I just felt the urge to pass my condolences to you and your wife. Maddie sounds like she was an amazing little girl with such strength and good humour. I do not know of any adult that would be able to face her situation with such apparent strength. I suppose that part of it came from trusting in her parents and part of it was just her own character? I don’t know – you would know you own little girl best. For what it is worth, it sounds as though Maddie was so lucky to have such a nurturing, loving and wonderful family.

    I wish you and you wife all the best for the future. I hope that you have passed the worst of your grieving together and are able to look forward to the future. I wish I could have known Maddie while she is alive but I feel touched that I was able to read her story and know that such courageous person lived for a time. Thank you for that.

    Kindest regards,
    Fiona Clare

  57. Doug Reader says:

    I was deeply touched by your website that is both a memorial and done in honor of your beautiful daughter. I read every journal entry and by the end the tears were so heavy I could hardly see what I was reading. She was and is so beautiful my heart goes out to you.

    My wife and I lost twin boys at birth years ago but as much as that hurt, I cannot imagine the pain that you feel. All I can say that as time goes by, the pain will not be as bad but the rememberence will always be there.

    One cannot explain the feeling of watching your child, one who you love more than anything, pass before your eyes. You will meet others who are going through what you have gone through and you will be able to bring them some degree of comfort as you can relate. People may say that they know what you are going through but we both realize that haven’t a clue. I have spoken to numerous parents who have lost children and by doing so it has always made me think of my boys.

    Thank you for your site and it is my prayer that you are doing better and may you remember you are never alone. She will always be there.

    Doug Reader

  58. Tina Loucas says:

    Dear Neil

    I didnt get to know you as I entered the list in July.

    I read your email and browsed Maddie’s site. I am very, very sad for you and your partner and feel for you so much. This thing shouldnt happen to anyone, let alone a child.
    Maddie is an angel. And they do exist. She couldnt be happier. She was looked after all the way through. One day, you will be reunited.

    Regards
    Tina Loucas

  59. Vicki Hamilton says:

    Hi Neil,

    My brother has just been diagonised with a grade 4 brain tumor, we are still in the very early stages of what you have bben through. He is 34 and is a single dad to a 10 and 12 yr old boys.
    I myself have a 3yr old and 7 yr old and when I kiss them goodnight tonight we will sing a extra song for Maddie, your little angel.

    Your web site is very sad but helps people in my situation enormously for which I will be forever grateful.

    I cannot comprehend what ou go through every waking moment but my thoughts and prayers are with you,

    Love Vicki
    Alstonville
    NSW

  60. Julie Brown says:

    Hello Neil,
    I have just read your farewell message to the brain tumour group and I just wanted to say a personal farewell. I know how you feel, I too have signed off on two of the lists and the ozbrain one will go soon as well. Our son died on 11th August. It really is the most horrible thing to loose a child even if mine was 22. Our family ends with him as our other son has a mental disability and will not have children of his own. Your daughter looked like a lovely fun child, I have read her website.

    We go to Port Macquarie on Monday where my parents live to spread his ashes at sea as he requested. We have had approval to have a bench made with his name on it. We hope to put it overlooking the spot where his ashes will go.

    I wish your family well as you go the journey that we are traveling as well.

    Regards,
    Julie Mother of Andrew forever 22

  61. Hanan Livneh says:

    Your Maddie was a beautiful girl, and this is a beautiful, moving site.
    It tells a heartbreaking story.
    I wish I could relief some of your sorrow, although I know it can not be done.
    But I know what you are going through. Maddie’s story made me re-live what our family went through during 2.5 years of heroic struggle, from the time my brother was diagnosed with GBM, until he passed away two years ago at the age of 51.

    I can only hope that time will mellow out your sorrow, and that one day you and your family will be able to return to a relatively normal life.

    Please be strong!, and please accept my condolences,

    Hanan Livneh
    Tel Aviv, Israel