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Diagnosed Ehlers Danlos Syndrome now Life threatening vascular compressions, please help me raise funds for surgery in Germany.

  • Fundraising

      28 April 2024
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    Yesterday at the Clive market I was able to talk to many people about Ehlers Danlos Syndrome and how it affects the body, sharing information raises the awareness of how the abdominal vascular compressions affect the body and why surgery becomes life saving.

    Jam, baking, flowers and jewellery were sold and a raffle kindly provided by mitre 10 all help to raise money for Caitlin’s surgery.

    I am excited to say I have made a calculated leap and booked her surgery for 22nd August 2024. The race is on to raise funds, ( yes, many sleepless nights😊)

    It is wonderful to hear of those returned having had this specialised surgery show significant improvement.

    I am very grateful for everyone’s kind wishes and help in getting us to Germany.

    We are going !

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  • Deteriorating health

      8 April 2024
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    We are so very grateful for words of support and donations helping us get to Germany.

    Caitlin’s health continues to deteriorate with mal nourishment at the forefront of concern but we are doing our best.

    Thankful to wonderful people like Tina and her team who are running a fundraiser quiz this Friday and Latteys engineering who are organising a fundraising event for 6th July.

    My heart goes out to all family’s struggling with this condition. As specialists become knowledgeable in diagnosing there will be more families fighting a system that does not want to help. It’s exhausting and frighting.

    Please continue to share these story’s, The more people talk about it the closer we get to having pressure put on our DHBs to assist.

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  • Thankyou

      28 February 2024

    I wanted to take a moment to thank everybody for your good wishes and donations.

    It’s indeed humbling to have your help in getting Caitlin to Germany, as I learn more from others who have had this much needed operation it astounds me that our DHB do not want to help.

    The excuse of “ experimental” is just not good enough for all the young adults needing the life saving surgery that is available. Until March last year it was funded through Te WhataOra. Living with Ehlers Danlos Syndrome is hard enough with all the complications that go with it.

    Continual fainting ( PoTS)

    Dislocations/ subluxations on a daily basis.

    Debilitating pain caused by eating ( compressions)

    Stomach/ bowel motility issues

    Chronic fatigue, and the list goes on

    To have then being diagnosed with abdominal vascular compressions which are life threatening and fail to help when surgery is available and NZ surgeons who want to perform this surgery in NZ but are being blocked from doing so is heartbreaking.

    How many more need to die ?

    Please help all those suffering by spreading information and raising awareness.

    In the meantime we push on with the help of friends and the wonderful generosity of friends we have not met. I will be forever grateful for your help.

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  • Health deteriorating

      19 February 2024

    It’s been awhile since my last post. Caitlin’s ( bean) health is deteriorating with serious talks around the need for nasal gastric feeding, something we have desperately tried to avoid. Getting to Germany is vital.

    On a positive note when we recently saw Dr Burling he was able to show us in x-ray photos the connection of compressions being responsible for the terrible back pain experienced every day. Really encouraging to know that the operation in Germany will alleviate this too. It’s the combination of back pain and overwhelming nausea that confines her to bed every day and has her on multiple medications. How wonderful it would be to have reduced pain and be able to come off some medication. This combined with being able to eat without pain is not only life changing but potentially life saving too.

    Please continue to share our story🦓

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  • Thankyou so much

      18 December 2023

    Words can’t express our gratitude to everyone helping get Caitlin to Germany.

    From individual donations to the wonderful love and support shown over the last 2 days with K- Studio generously donating followed by the benefit concert today which raised $3600.

    Raising awareness of this condition not only helps us but everyone to follow. We are so hopeful that this surgery will one day take place in NZ. Progress is happening. Sadly not in time for us, we need to go to Germany and appreciate the efforts of everyone helping us.

    Merry Christmas, 2024 holds so much hope💞

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  • Performing Arts variety fundraising concert

      8 December 2023

    Performing Arts Variety Fundraising Concert

    Raising money and awareness of EDS

    18th December

    Blyth Theatre ( Iona College)

    4pm

    Entry by donation

    Please come and support fundraising for Caitlin, you are all welcome

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  • Well done Kev !

      7 December 2023
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    Thankyou and congratulations to my brother and Taupo’s librarian who completed the Lake Taupo Cylcle Challenge.

    Kevin cycled the Lake raising awareness of Ehlers Danlos Syndrome in support of his niece Caitlin.

    You were awesome ❤️

    A huge Thankyou to our local friends lead by ‘Team Anke’ who are planning another bake sale this weekend. Your support is so greatly appreciated.

    To Sophie-Jean along with present and past students putting together a variety concert in Havelock North on the 18th Dec you are all amazing and we can’t Thankyou enough for helping us get to Germany.

    To everyone who can support the concert -

    Blyth Theatre

    Iona College, Havelock Nort

    18th Dec

    4pm

    Entry by donation.

    Cant wait to see you there😊

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  • Here we go again

      10 November 2023
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    Another day in ED.

    Try so hard not to go but sometimes you need the extra pain relief. Thankyou to the wonderful ambulance paramedics who were so kind and compassionate.💞

    Cant thank everyone enough who have donated money or shared our story.

    Friends who are organising a ‘ bake sale’ this weekend and my brother raising awareness by cycling around Lake Taupo later this month. You are all wonderful.

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  • New diagnosis added

      4 November 2023

    Thankyou to everyone for your wonderful donations and words of encouragement and support.

    We have heard back from Professor Sandmann ( Surgeon in Germany) confirming our NZ diagnosis and adding left floating kidney. This helps to explain the attacks of crippling pain in her left side.

    Please continue to spread our story, Thankyou

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  • Our funding goal

      21 October 2023

    Going by others we are trying to raise $180,000 for this surgery.

    Flights, accomodation and medical expenses.

    Thankyou to everyone for helping us get to Germany.💞

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  • Wonderful support

      20 October 2023

    Thankyou everyone for your wonderful support.

    This is such a daunting task to raise this sum of money.

    I reflect on Caitlin ( beans) life and how hard it has been. From the age of 11 when she was first admitted into hospital with stomach pain to so many years later now that we finally have answers.

    Pubity saw many changes in her health with stomach issues getting worse to dislocations. So many times being told her pain was “ emotional” .

    Testament to her inner strength to cope from the hospital overdose ( respiratory arrest) to being told to apply for euthanasia. Her mental health heavily tested.

    I will never stop fighting for her and she deserves a chance at life, not just lying in bed day after day too sick or in too much pain to get up.

    Please please continue to share her story.

    Thankyou so much💞

    This operation will allow her to eat and have significant pain reduction.

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  • $160,000-$180,000

      16 October 2023

    From others having had this surgery in Germany we know we are aiming to raise $160,000-$180,000.

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  • Thankyou❤️

      16 October 2023

    Thankyou so much to everyone for words of encouragement and donations.

    It is indeed humbling. Such an enormous task ahead but knowing that Caitlin ( Beans) life can be made better having this surgery is so hopeful.

    I will never stop fighting for her.

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