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
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
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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