Diagnosed Ehlers Danlos Syndrome now Life threatening vascular compressions, please help me raise funds for surgery in Germany.
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.
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.
Latest donations
Thankyou very much Kirsty for your donation, we are grateful for your help.
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.
Thankyou very much Caroline for your donation, it is greatly appreciated.
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.
Thankyou very much Martin for your donation, we are very grateful for your support.
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