Back to page

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

  • WE ARE HOME

      28 September 2024

    Hello everyone, it is with great relief we are back home in sunny Hawkes Bay.

    Without doubt the last 6 weeks away have been incredibly stressful in terms of logistics and the operation itself.

    As a parent my role was to get us to Germany and support Caitlin through the operation, this in itself has been huge as those fundraising will understand.

    I did not appreciate the toll it would take on us being away on the other side of the world without family and friends support.

    The enormity of the operation cannot be understated, that said I fully believe it was 100 percent worth it.

    Caitlin can eat, drink, stand without fainting amongst other benefits and she is still only 5 weeks post op.

    She did have complications which saw extra time in the clinic and we are working through these.

    There are a lot of stories similar to ours making headway in the news which is great, please keep raising awareness as this needs to be addressed by our health system.

    Local doctors in our hospital are still holding the view that this is an experimental and unnessasary operation, I would love them so very much to go to Germany and see what is being done. They would without doubt change there point of view.

    To those fighting to go to Germany I can only urge you to keep going and dont give up.

    I will always be grateful to everyone who helped us financially and with support go to Germany for this vital operation.

    Thankyou all so very much

      1 comment  |  Login to leave a comment

    • 28/09/2024 by Bridget Horder

      So glad to read your update. Welcome home all the very best for your recovery 💪💪💪💯❤️❤️😊

  • Scans and surgery

      26 August 2024

    Hi all Friends and family,

    I am pleased to inform you all that after scans in Leipzig with professor Scholbach an extra compression was found and we made our way to Dusseldorf for the surgery.

    Clinic bel Etage is where we are and I cannot speak highly enough of the care we have received.

    Professor Sandmann did Caitlins surgery on Thursday, it proved to be long and difficult with surgery lasting 12 hours. I am pleased to say all compressions were fixed.

    The last few days have been tough with her back in theatre to reinflate lungs after a partial collapse but they are all good now.

    To anyone reading this and also considering coming here I can only urge you to keep pushing on. I have no doubt in my mind that we have made the right decision to come here. the expertise and care are exceptional.

    To everyone who helped us come here I can't thank you enough.

      0 comments  |  Login to leave a comment

  • We are in Germany

      19 August 2024
    Main image

    We are excited and relieved to finally be in Germany. After resting in Frankfurt we flew to Berlin and Caitlin felt well enough to see a few sights, today we train to Leipzig for scans tomorrow. Looking forward to hearing the results.

    An interesting phone call 2 days before we left NZ from our DHB advising us not to go to Germany as they believe the results of the operation are not beneficial?

    I personally believe they are trying to stem the flow of New Zealanders to Germany.

    I am open minded and if the scans tomorrow show there is no benefit in surgery we will rethink the situation. I feel it's unlikely at this point as the DHB did acknowledge the compressions but admitted they would not do anything about them. We were also informed that Caitlin has a fracture in her back showing up in an X-ray February 23. That information was failed to be passed on only coming to light now. ( a glitch in the system)

      0 comments  |  Login to leave a comment

  • Surgery this month

      7 August 2024

    One week to go before we leave for Germany!

    So many mixed emotions, gratitude to everyone who helped raise money and the kindness and support shown by so many. It’s a daunting prospect to travel to the other side of the world with a sick child and facing the surgery which we are so grateful to be having but do not underestimate the recovery.

    To those who have been through this process I thank you for sharing your stories and helpful tips, I hope in turn I can help others.

    I will post updates of our journey, we leave Auckland just before midnight on the 14th August have scans in Leipzig on 20th and surgery in Düsseldorf 22nd.

    Thankyou all so much💞

      2 comments  |  Login to leave a comment

    • 07/08/2024 by Bumika

      Good luck with the procedure. OUr prayers and well wishes go with you!

    • 07/08/2024 by Bridget Horder

      So pleased you will soon be on your way. All the very best to you both 💪💪💪💯❤️😊

  • Thankyou “Latteys”

      16 July 2024

    Thankyou so much Latteys Engineering for a wonderful night.

    Great food, excellent company and amazing auctions.

    Matt Watson was awesome as was my brother-in-law Dave Umbers who was MC and auctioneer.

    You have all helped us get to Germany.

    4 weeks tomorrow we leave for Germany and it can’t come fast enough.

    On our final push for fundraising, please continue to share our story, we are so grateful to everyone for your help and support.

      0 comments  |  Login to leave a comment

  • “Latteys” fundraiser

      3 June 2024

    Thankyou so very much to everyone for getting us this far, we truly could not have done it without you.

    Latteys Engineering have created a fundraiser event in July which I am excited to say has sold out. Matt Watson is guest speaker and along with a 3 course dinner there will be amazing auctions.

    I am so humbled by the support and good wishes from everyone.

    We leave for Germany on 14th August with surgery scheduled for 22nd August.

    Feels like we are getting closer and doing the final push of fundraising to get there. I will once again be at Clive market on Saturday 22nd June selling jewellery that Caitlin has made along with baking.

    Please share our story and page to help us afford the surgery

    Thankyou💞

      0 comments  |  Login to leave a comment

  • Fundraising

      28 April 2024
    Main image

    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 !

      0 comments  |  Login to leave a comment

  • Deteriorating health

      8 April 2024
    Main image

    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.

      0 comments  |  Login to leave a comment

  • 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.

      0 comments  |  Login to leave a comment

  • 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🦓

      0 comments  |  Login to leave a comment

  • 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💞

      0 comments  |  Login to leave a comment

  • 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

      0 comments  |  Login to leave a comment

  • Well done Kev !

      7 December 2023
    Main image

    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😊

      0 comments  |  Login to leave a comment

  • Here we go again

      10 November 2023
    Main image

    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.

      0 comments  |  Login to leave a comment

  • 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

      0 comments  |  Login to leave a comment

  • 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.💞

      0 comments  |  Login to leave a comment

  • 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.

      0 comments  |  Login to leave a comment

  • $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.

      0 comments  |  Login to leave a comment

  • 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.

      0 comments  |  Login to leave a comment