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
Fundraising 28 April 2024
Yesterday at the Clive market I was able to talk to many people about Ehlers Danlos Syndrome and how it affects the body, sharing information raises the awareness of how the abdominal vascular compressions affect the body and why surgery becomes life saving.
Jam, baking, flowers and jewellery were sold and a raffle kindly provided by mitre 10 all help to raise money for Caitlin’s surgery.
I am excited to say I have made a calculated leap and booked her surgery for 22nd August 2024. The race is on to raise funds, ( yes, many sleepless nights😊)
It is wonderful to hear of those returned having had this specialised surgery show significant improvement.
I am very grateful for everyone’s kind wishes and help in getting us to Germany.
We are going !
Latest donations
Thankyou very much for your kind donation, we are grateful for your help in getting the much needed surgery. This will help change her life.
Thankyou very much Peter for your donation, sadly for all those with this condition there is no funding from our DHB we are reliant on the kindness of people like yourself to help us. Fortunately there are wonderful people in NZ. We are very grateful💞
Thankyou very much Amy for your donation. We really appreciate your help to get there.
This is so very kind and thoughtful, I are very grateful for your donation helping to save and change her life.
Thankyou very much Jane for your donation, we are grateful for your help
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