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Our daughter has Ehlers- Danlos Syndrome with failing stomach, please help us

  • One year on

      25 November 2020

    To all our wonderful family and friends, as Caitlin’s page draws to a close I want to give you a final thankyou. Your support financially and emotionally has been amazing and we have been so humbled.

    Our ongoing plan is to continue with as much treatment as we can afford as the benefits are showing.

    To anyone who is considering treatment with Dr Burling from our experience it has been so worthwhile. Caitlin dislocates less and combined with Dr Cederwall we are well on our way to investigating the causes of her many stomach issues that are all linked to EDS.

    Sadly those with EDS like Caitlin receive no funding towards treatment but if you are considering treatment know that we have found it beneficial.

    Merry Christmas and happy holidays.

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  • Thankyou

      25 September 2020

    To our wonderfull friends and family.

    Thankyou all for your ongoing support, we are continuing Caitlin’s treatment in Auckland which is helping to slow down her rate of dislocation. It is so hard to see her in continual pain but I am grateful to you all for your kindness and empathy. We are now looking into purchasing braces to also help minimise the dislocating. For anyone else in our position I will update this post to let you know how this works out. As you would be aware the difficulty is fragile skin that comes with EDS.

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  • Thanks everyone

      3 May 2020

    Thankyou to everyone for your continued support.

    Caitlin last night created a Give a little page for her Dad. We are needing to raise $120,000 for him to receive Immunotherapy treatment.

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  • Tests to continue

      18 April 2020

    Hi Friends,

    We were able to have a phone consultation with our Gastro Doctor who has many more tests that he wishes Caitlin to have done. Sadly many of these should have been done years ago however These are being organised now but with COVID19 present there are to be expected delays. Her weight continues to drop which is worrying but she is doing her best. I am pleased to report that she is starting to feel the benefits of her treatments in Auckland with Dr Burling resulting in less dislocations. While his clinic is presently closed these treatments will continue as soon as they can.

    Happy to report that Brian had his surgery and is recovering well.

    Best wishes to you all during Lockdown.

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  • Thankyou

      28 February 2020

    Thankyou to everyone who continually support our lovely daughter.

    We finally were able to have her stomach emptying test run this morning. Yes it was hard for her to keep down the egg she had to eat but she managed to do it !

    Now waiting on results.

    Her weight continues to drop which worries us so much however she tries really hard to keep the weight on.

    We go back to Auckland on Tuesday for further treatment.

    For our lovely supporters you will be saddened to hear that Brian ( Caitlin’s dad) has been diagnosed with Cancer. He has undergone tests and is due to have surgery soon.

    We are all very hopeful of a positive outcome.

    In the meantime we remain thankful to everyone.

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  • Thankyou

      20 January 2020

    Thanks to everyone for their good wishes and donations.

    We have seen the gastroenterologist and testing is to be started, this will help provide information on how best to help Caitlin with her stomach issues.

    We are soon to resume our trips to Auckland for continued treatment and thanks to the financial help we can double the trips and treatment from July. As you can imagine being the only doctor to provide treatment there is a long waiting list.

    Caitlin continues to amaze us with her strength despite the pain she lives with. There are days it’s overwhelming but she battles on determined to be as independent as she can.

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  • Appointment for Caitlin

      14 December 2019

    We are so relieved to have secured an appointment for Caitlin to see the Gastroenterologist. This is a vital first step in getting the correct treatment for her stomach deterioration. It’s with heartfelt thanks we are grateful for the donations and offers of help and support.

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  • Wheelchair for summer

      6 December 2019

    Thanks to everyone’s kindness in donations Caitlin now has a wheelchair. This will make getting around so much easier. Thanks again for all the lovely messages of support..

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  • Thankyou

      1 December 2019

    We are so overwhelmed with the donations given and messages of support. Thankyou

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