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

$34,370 of $180,000 goal
Given by 235 generous donors in around 6 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

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Deteriorating health  8 April 2024

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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Latest donations

Jane
Jane 10 hours ago
$50
Leanne Umbers

Thankyou very much Jane for your donation, we are grateful for your help

Leanne Umbers
Guest Donor
Guest Donor 11 hours ago
Best wishes for surgery
$22
Leanne Umbers

We are really grateful for your support helping us get to Germany. Thankyou

Leanne Umbers
Jodi
Jodi 4 days ago
$100
Leanne Umbers

Thankyou very much Jodi for your donation, your support in helping us is greatly appreciated.

Leanne Umbers
Dianna
Dianna 4 days ago
$10
Leanne Umbers

Thankyou very much Dianna for your support and donation, we are grateful for your help in getting to Germany

Leanne Umbers
Janene
Janene 4 days ago
Strength and love to both of you
$65

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 page was created on 15 Oct 2023 and closes on 15 Oct 2024.