30 Nov

Our beautiful girl passed away at 5:15pm this afternoon. It was very peaceful.
Thank you so much to everyone for the amazing support we have received.
Much love.



61 Responses to “Matilda”

  1. Jac November 30, 2013 at 7:11 pm #

    Oh, Laura. There are no words.

    We are so sorry for your devastating loss.

    Love to you all.


  2. Emma Dodd November 30, 2013 at 7:18 pm #

    On Laura, words cannot express how sorry I am to read this. Please know that I am thinking of you and your family at this very hard time. Many hearts will be aching tonight, but a star will be shining brighter than ever. Lots of love always.

  3. Melissa November 30, 2013 at 7:19 pm #

    Dearest Laura and Simon,

    Sending you all our love and thoughts. Love Russel and Melissa

  4. Susana Gonzalez November 30, 2013 at 7:21 pm #

    I am so sorry to hear Laura. My deepest condolences.
    Rest in peace beautiful Tilda, you deserve it
    Love from all of us

  5. Clare November 30, 2013 at 7:31 pm #

    My deepest sympathy to you all. My thoughts are with you, Simon and your families.

  6. phillip melchior November 30, 2013 at 7:32 pm #

    Dear Laura and Simon
    you have been very much in our thoughts these last days. Your courage and care has been inspirational to all who know you. We are so very sad for you all.
    Phillip and Barbara

  7. Cally November 30, 2013 at 7:32 pm #

    Tilda may not be with us but her spirit lives on in the hearts of all who loved and followed her struggle.
    We will never forget her. Love to you all. Love Cally xx

  8. Natalie (Deans) November 30, 2013 at 7:35 pm #

    So sorry for your heart shattering loss Laura and Simon. May little Matilda rest in peace. Wishing you all the strength in the world.

  9. Nicole Brittain November 30, 2013 at 7:45 pm #

    My heart breaks for you and your family, may Matilda rest in peace. Laura, you are truly amazing and inspirational. May a star shine brightly and watch over you all every night. Nicole x

  10. jackie November 30, 2013 at 8:11 pm #

    Dear Laura, Simon and all of your family, shattered for you and my heart breaks, may gorgeous tilda now rest in peace. Know she will always be in our hearts and we will never forget her. She will be an angel watching over all of us…Sending you strength and lots of love…you are all amazing and so inspirational…Jackie & all of my family [Goulden & Smith] xx

  11. Christine Grover November 30, 2013 at 8:18 pm #

    She will always be that beautiful, curly haired little girl wearing huge sunglasses in your kitchen in Darwin to me, funny and giggly. So sorry to hear this terrible news xxx

  12. Kimmi November 30, 2013 at 8:19 pm #

    Deepest Condolences Laura, Simon & Family. Thinking of you at this difficult time. Love Kim & Alannah Xx

  13. Ann Falster November 30, 2013 at 8:20 pm #

    Dear Laura & Simon,

    Such sad news. What an amazing little fighter Matilda was. Our thoughts are with you and the family at this very sad time. Matilda lives forever in your hearts.

    Love Stig & Ann

  14. Mandy Bruton (new Ashby) November 30, 2013 at 8:22 pm #

    I’ll be searching for the brightest star tonight. Thinking of you all. Xx

  15. Sinead November 30, 2013 at 8:23 pm #

    My dearest Laura,
    My heart aches that the world has lost such a beautiful spirit full of tenacity, strength and courage who has fought more in her short years than many of us will face in a lifetime.
    May she rest in peace and dance forever with the Angels in those sparkly shoes of hers.
    Much love to you and hugs across the miles xxx

  16. Kirsten November 30, 2013 at 8:24 pm #

    I am so very, very sorry. Tilda was such a vivacious little girl, she touched everyone she met. She will be so sadly missed by all. My love and thoughts are with you xxooxx

  17. Nick Melchior November 30, 2013 at 8:25 pm #

    We have been thinking of you constantly. She was a wonderful girl and we were so lucky to have known her, even if it was so briefly. She will live forever in the memories of you and your family and everyone else who knew her.

    All our love,
    Nick and Abbie

  18. Garry Laird November 30, 2013 at 8:33 pm #

    Dear Laura and Simon
    You have been in our thoughts so much and words cannot express the sorrow we feel at this moment.
    Love to you both and to all the family.

    Carole and Garry

  19. Steve & Melisa November 30, 2013 at 8:36 pm #

    Please know that our thoughts are with you in your time of grief and may Matilda remain in Jehovah’s care. Love Melisa, Steve, Jessica and Lachlan.

  20. Jennifer November 30, 2013 at 8:47 pm #

    All of my thoughts and prayers are with you all. She was a great girl with so much courage and determination. Matilda will be missed by all her knew and loved her.

  21. Kristy Dijkstra November 30, 2013 at 8:54 pm #

    Such sad news! So sorry to hear. My thoughts are with you Laura, Simon & Maggie.
    Tilda was such a gorgeous girl & will be sadly missed. Rest in peace beautiful Tilda xo

  22. Shayne Tanner-Black November 30, 2013 at 9:02 pm #

    Dear Simon, Laura and Maggie,

    Our thoughts are with you all.


    Shayne, Natalie, Ella, Macy and Paris

  23. Margaret Black November 30, 2013 at 9:04 pm #

    Dearest Laura and Simon
    We are thinking of you and sending all our love. Tilda was so lucky to have such wonderful parents through her life and I know she gave you great pleasure. You both did everything in your power to make life as comfortable as possible for her.
    Lots of kisses to you both
    Margaret and Bill

  24. Jan and Dave Marshall November 30, 2013 at 9:51 pm #

    We are devasted to hear of Tilda’s passing. Her tenacity and fighting spirit will live on forever for those of us who read your beautiful and inspirational website. You are amazing parents and filled Tilda’s too-short years with so much love and happiness. Our thoughts are with you all at this very sad time.

  25. Margie and Geoff Dowling November 30, 2013 at 10:04 pm #

    Dear Laura and Simon our deepest sympathy to you both at this heart breaking time. You have been amazing parents. Words are so hard to express how sad we feel for you and all your family. I still remember images of Matilda standing next to you when you were married – she looked so beautiful.
    All our love
    Margie and Geoff

  26. Kristy November 30, 2013 at 10:04 pm #

    Much love and prayers for you family a friends.

  27. Daryl Linnane November 30, 2013 at 10:34 pm #

    A very special girl with very special parents and family. You have been inspirational Laura in sharing your journey. Words are so inadequate at this sad,sad time but please know we are holding you all in our thoughts tonight, tomorrow, and in the days and times that follow.. Our deepest sympathy for your heartbreaking loss. . Love Daryl..

  28. morrisonpix November 30, 2013 at 10:52 pm #

    our hearts are breaking with the news of dear Tilda, Laura and Simon.. she was such a special soul. will always remember the time we spent together with smiles and laughs and joy x


  29. Eleanor November 30, 2013 at 10:56 pm #

    We are too sad for words, we’re sending all our love. El & Al xxxx

  30. Amanda Davies November 30, 2013 at 11:17 pm #

    I am so sad to hear of the passing of your little girl. My heart goes out to you and your family at this tough time. Xxoo

  31. Mick and Holly Formosa December 1, 2013 at 1:35 am #

    Reg and Laura,

    Love and thoughts to you both at this very difficult time… Matilda has left an inspirational legacy behind her and has touched the hearts of so many… As much as we knew this day would come it is still a huge shock…

    RIP Junior…

    Mick and Holly

  32. Wendy Bleecker December 1, 2013 at 1:56 am #

    Our prayers are for your family. Tears are in our eyes for your loss. May God wrap His arms around you all. God be with you. Wendy and John Bleecker

  33. Jill December 1, 2013 at 2:09 am #

    Hugs and prayers from our family to yours, Laura. You are a true warrior mom!

  34. Laurie December 1, 2013 at 2:10 am #

    There are no words. I am so very sorry for your loss. All my love to your family.

  35. Jaime crawford December 1, 2013 at 3:02 am #

    I am so very sorry for the loss of your beautiful fighting girl. I read through your blogs and it rings so familiar. My daughter has Batten Diseasea and she is 2. I am praying for your family and wishing God would ease your pain.

  36. Julia,Brian, Tobias and Elijah December 1, 2013 at 3:55 am #

    P4 will never be the same without Tilda. We will miss her so very much. Our love to Laura, Simon and Maggie. xoxox

  37. Suzanne December 1, 2013 at 5:51 am #

    You are always in my thoughts. And beautiful Tilda will always be a star in our night sky. I cannot express how much love and thoughts I’m sending you at this sad time . Much love, Suz, Ian and Archie xx

  38. JessB December 1, 2013 at 6:38 am #

    I am so sorry to hear that, and am sending you all love, and keeping Tilda in my prayers more than ever. Love to you, Laura, and to Simon and Maggie, and all your families.

  39. Jennifer Mars December 1, 2013 at 7:24 am #

    We are so profoundly sorry. Even although you were told that the end was very near, Dear Tilda’s passing has been a shock. Our condolences to you, Simon and all your family and friends. Jennifer Mars and Rudy Leregger in California.

  40. Olivia December 1, 2013 at 7:39 am #

    Lost for words, Laura. Your Tilda was beautiful and happy because of the love you and Simon gave her. Share her Peace between yourselves. You are an extraordinary family. Sending my very fondest love. Olivia

  41. Emily Raso December 1, 2013 at 8:36 am #

    My heart aches for you, Simon and Maggie. Rest in peace beautiful Tilda. You have left lovely dancing footprints on all our hearts. Much love from Emily, Stuart, Sue and Ange. Xoxox

  42. Jennifer Mars December 1, 2013 at 8:45 am #

    And today. Cannot imagine how her mum and dad can bear this. Jx

    Jennifer Sent from my iPad

  43. Sharron T. December 1, 2013 at 8:48 am #

    Simon & Laura, words cannot make your sadness easier, but know in time your fondest memories of Tilda will bring you so much peace & happiness. Lots of hugs & love to you. You have been an inspiration to all who know you. Love Shaz.

  44. Annie December 1, 2013 at 9:48 am #

    Thank you for your bravery and eloquence in sharing Matilda’s beautiful, indomitable spirit. She will continue to shine and inspire. My heartfelt sympathies to you Laura and Simon and all your loved ones. XXX ❤

  45. Ricky December 1, 2013 at 10:34 am #

    My condolences to you both Simon & Laura, she was such a beautiful girl with such a strong spirit and personality, may she rest in peace.

  46. Anne Bunting December 1, 2013 at 11:01 am #

    Laura you said once that when it was time for Tilda you wanted it to be peacefully and surrounded by love. I am sure Tilda knew this and fought so hard to remain in the cocoon of love you, Simon and all your family created for her. I cannot imagine the emptiness you must be feeling now but I hope the love and support of everyone around you will help you through the coming weeks.
    All our love Anne and al the Robinsons xxx

  47. Louise December 1, 2013 at 11:37 am #

    The entire Glenallen community is heartbroken that our beautiful P4 butterfly has left us. We loved her dearly and will always remember her beautiful smile, indomitable spirit and incredible tenacity, and of course her sparkly shoes!! To you Simon, Laura and Maggie, and all your family, we send our deepest sympathy and love. We admire your courage and feel humbled and privileged to have been allowed to travel part of your journey with you. God bless you all. Louise and the entire P4 family. Much love XXXXX

  48. Sally Luckock December 1, 2013 at 11:50 am #

    Dear Laura Reg and Maggie
    You are all coping and have been coping with pain I cannot ever imagine. I hope it is of some help to know we are all thinking of you. I will never forget Tildas laugh the last time I spoke to her- the laugh of a truly happy little girl. You four will always be to me one of the most amazing families I know. I send you all my very best love at such sad time xxx

  49. Terri Beggs December 1, 2013 at 1:05 pm #

    Dear Laura, Simon & little Maggie,
    Our deepest sympathy to you and all the family. You have been the most wonderful parents and careers to your beautiful Tilda. Her fighting spirit has been inspirational as has your courage and love. Her star will always shine brightly.
    Love Terri & Roger

  50. Monique Davis December 1, 2013 at 1:20 pm #

    Thinking of you all so very much during this sad time.

  51. Anne Ryan December 1, 2013 at 3:21 pm #

    I am sorry to hear about the loss of Tilda. I am thinking about you and your family at this sad time.

  52. Ruth December 1, 2013 at 3:23 pm #

    Much love to you & Simon in this difficult time. Her body may be gone, but her spirit & light will be in your hearts forever! xoxo

  53. Alison Caldwell December 1, 2013 at 3:29 pm #

    I’m so very sorry to hear about this, Tilda was such a gorgeous little girl. I’ll never forget her, she’ll been in my thoughts as long as I live! As will you. Very sad for you all but at least the pain and suffering Tilda was under is now over, though during that very short time i spent with her she didnt show anything at all to suggest she was under any at all. She was such a happy inspiring person, I will never forget her and her beautiful sparkly shoes!!

  54. Kristen Woods December 1, 2013 at 8:08 pm #

    Laura, I haven’t seen you for years but none of that matters. Mum had filled me in many times on Tilda’s plight and your truly inspirational blog . As a mum myself, l cannot imagine how difficult this is for you and your family .i can only hope that , the same courage and tenacity you have shown in Tilda’s life , helps you in your grief. Your devotion and relentless efforts to keep Tilda happy & comfortable are obvious. I hope you find some peace in that knowledge. Thinking of you all & the brightest star tonight, Tilda! ❤️ Kristen Woods ( Linnane)

  55. Ken and Wendy Brown December 1, 2013 at 9:11 pm #

    We are so sorry to hear that little Tilda has passed away. We shared a small part of her life and we feel your sadness. She was a little girl who experienced a great deal of love and she could not have been cared for by a more loving family.
    Love Ken and Wendy

  56. Crystal R Alger December 1, 2013 at 10:28 pm #

    I am so sorry to hear of the passing of your beloved Tilda. My prayers go out to you and your family and I just pray that you can find peace

  57. Irene December 2, 2013 at 7:17 am #

    Dear Laura, Simon and Maggie, I read your news of Tilda’s passing with much sadness. I am sending you all hugs OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

  58. Jennifer Mars December 2, 2013 at 2:42 pm #

    Jennifer Sent from my iPad

  59. Ennia Iglesias December 3, 2013 at 9:00 am #

    Laura and Simon I’m thinking of you in this difficult time. My thoughts and prayers are with you. I have so many good memories when Matilda was at Angliss. It was such a joy to have her in our room. Matilda a truly an inspiration!!! Rest in peace beautiful Matilda!! Love. Ennia

  60. Sandy Quail December 3, 2013 at 7:43 pm #

    My thoughts and condolences are with you all at this heartbreaking time. I know there’s no words than anyone can say to make any of this ok, but we all know how much your little angel was loved. So sorry to hear the news.

  61. Debra Fairfield December 24, 2013 at 8:43 am #

    Dear Laura,

    I am so very sorry to hear about Tilda’s passing. Our thoughts and prayers are with you, Simon and Maggie as well as all of Tilda’s family.

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