Our daughter has Ehlers- Danlos Syndrome with failing stomach, please help us
Raising funds for our daughter to see a Gastro specialist in Wellington. He specialises in Ehlers- Danlos syndrome
Hawke's Bay
Our beautiful daughter Caitlin is 18 years old. She has Ehlers -Danlos Syndrome which was formally diagnosed in June this year, we travel monthly to Auckland to the only specialist who provides treatment in New Zealand.
Caitlin leads a life filled with pain despite many trials of pain relief, sadly frequent dislocations are normal and we are saving for a wheelchair to help minimise dislocation.
Our finances are at their limit and we are asking for help as her stomach is now failing. We have a referral to see a specialist in Wellington about her condition, he too has full understanding of Ehlers- Danlos and the effects on the stomach. We understand tests will need to be done and we simply can’t afford this extra expense.
It has taken 8 years of hospitals, specialists and support to reach where we are today.
We are thankful to everyone who has helped us through this difficult time, We are now asking for financial help to provide Caitlin with ongoing treatment.
Please help us, she has been through so much and is so loved.
Thankyou
Use of funds
Funds raised will be used to pay for ongoing treatment and a wheelchair.
This means we can continue her treatment with the rheumatologist in Auckland whom we can only see privately but also see the Gastroenterologist.
Latest update
One year on 25 November 2020
To all our wonderful family and friends, as Caitlin’s page draws to a close I want to give you a final thankyou. Your support financially and emotionally has been amazing and we have been so humbled.
Our ongoing plan is to continue with as much treatment as we can afford as the benefits are showing.
To anyone who is considering treatment with Dr Burling from our experience it has been so worthwhile. Caitlin dislocates less and combined with Dr Cederwall we are well on our way to investigating the causes of her many stomach issues that are all linked to EDS.
Sadly those with EDS like Caitlin receive no funding towards treatment but if you are considering treatment know that we have found it beneficial.
Merry Christmas and happy holidays.
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