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

$37,105 of $180,000 goal
Given by 252 generous donors in around 11 months

Vascular compressions are life threatening. Please help me raise funds to take Caitlin to Germany for surgery. Caitlin has EDS

Havelock North, Hawke's Bay

Please help me save my daughters life.

Recently diagnosed with vascular compressions this is a serious complication and is life threatening.

Caitlin ( Bean) is now 22 years old . Her life is hard at every turn something more goes wrong.

From age 11 she has been hospitalised with severe stomach pain

Caitlin lives every day in pain

Barely able to attend school due to Illness from year 7, I homeschooled Caitlin from year 10.

A promising ballet dancer competing from 4 years old it was a devastating decision to stop aged 14 as she was constantly in hospital and daily in great pain.

5 years ago subluxations, dislocations and terrible back pain began along with nausea and vomiting and fainting.

After seeing a rheumatologist Caitlin was diagnosed with Ehlers Danlos Syndrome of classical phenotype along with PoTS.

This has all taken a huge toll on her mental health in which depression, PTSD, ADHD, Autisum and chronic fatigue have been diagnosed.

The vascular compressions diagnosed consist of-

MALS

Nutcracker

May Thurner syndrome.

Frighteningly these are life threatening and travelling to Germany for surgery is vital for improving and potentially saving her life.

Tragically Caitlin and her brothers lost there amazing Dad to cancer last year and I lost my husband and best friend.

I can’t do this alone and am asking everyone to share our story to raise funds and awareness of this condition.

If we are unable to reach this goal any money raised will go towards ongoing medical costs.

Thankyou in advance

Leanne Umbers' involvement (page creator)

I am Caitlin’s Mum and appreciate any donation given

Use of funds

Funds raised will contribute towards travel, accomodation and ongoing medical appointments, scans and treatments.

If we are unable to reach this goal any money raised will go towards ongoing medical costs.

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Latest update

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.

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Latest donations

Kirsty
Kirsty on 09 Sep 2024
$100
Leanne Umbers

Thankyou very much Kirsty for your donation, we are grateful for your help.

Leanne Umbers
Cody
Cody on 06 Sep 2024
You got this bean, we all believe in you.
$10
Leanne Umbers

Thankyou Cody for your donation and message of support, so nice to think of us as Bean recovers from surgery, we have an extended 5 days in hospital then reassess.

Leanne Umbers
Caroline
Caroline on 29 Aug 2024
$100
Leanne Umbers

Thankyou very much Caroline for your donation, it is greatly appreciated.

Leanne Umbers
Mike & Nicki
Mike & Nicki on 09 Aug 2024
Sending you the very best wishes. You've got this!
$200
Leanne Umbers

Thankyou so much, appreciate the positive message😊, very grateful for your donation in helping with the surgery costs. Only a few days before we leave for Germany and we are ready to go. Thanks again.

Leanne Umbers
Martin
Martin on 07 Aug 2024
$50
Leanne Umbers

Thankyou very much Martin for your donation, we are very grateful for your support.

Leanne Umbers

Who's involved?

Leanne Umbers's avatar
Created by, and paying to a verified bank account of, Leanne Umbers on behalf of My daughter - Caitlin Umbers
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This campaign started on 15 Oct 2023 and ends on 15 Oct 2024.