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Help Millie fight Ehlers Danlos syndrome and its life threatening complications

Cause page created in the Health category by Janine Hardiman for "My beautiful daughter Millie"


$32,933 donated

Given by 290 generous donors in around 8 months

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We have exhausted finances and need help to save our daughter.

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  Otago

Our beautiful eldest daughter Millie has recently been diagnosed with Ehlers Danlos syndrome (EDS) after 5 years of deteriorating health. EDS is a genetic connective tissue disorder affecting every part of the body. Millie has endured extreme pain, fatigue, nausea and has been misdiagnosed and traumatised as a result of the condition. Currently, her digestive issues are the main concern, her specialists believe she is suffering from severe gastrointestinal dysfunction. As a result, she is severely underweight and malnourished to the point her life is at risk.

Over the past 5 years, we have spent all we have and more trying to help our gorgeous girl. I have been unable to work for over a year in order to care for Millie, which has had a huge financial impact on our family. We have seen numerous specialists, had many unfunded tests, misdiagnoses and even had to look for help overseas in trying to find the cause of her ill health. In New Zealand, we have one doctor who specialises in treating Ehlers Danlos. Unfortunately, he is based in Auckland and so in order to see him each time we must travel from Dunedin. Additionally, due to Millie being a very complex case she requires gastrointestinal testing and treatment in Wellington.

At present we have been told it is likely that Millie with need a PEG-J tube surgically implanted to feed her, likely for life. This is obviously devastating and would greatly impact her quality of life. In the face of this huge challenge Millie has shown incredible resilience. At approximately 35kg she amazing and manages to keep up with her study in the hope of one day overcoming this and doing something good for the world. Despite her suffering she is one of the most positive people I know. We don't want her relying on a feeding tube forever. We are hoping to get a gastric pacemaker which is not funded or available in New Zealand. The pacemaker alone costs approximately $30,000 not including the cost implanting the device and we would need to travel overseas in order for her to receive this life-changing treatment.

Help us to not only save her life but get her the treatment she needs to thrive despite this awful condition.

Janine Hardiman's involvement (page creator)

Millie is my beautiful eldest daughter.

Use of funds

Costs associated with Millie's medical treatment, including tests, travel, and treatments. Any additional funding will be donated to EDS research

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Latest update

Extending the closing date  12 March 2020

Posted by: Janine Hardiman

We have flights and accomodation sorted and the appointment with Dr Jill Schofield in Denver booked. At this stage we simply don’t know how much everything is going to cost or how long we are going to be staying. An initial consultation is $3000, follow ups are $1000. Diagnostics, tests etc may be up to $5000. As far as treatments are concerned, Dr Schofield has access to many therapies that are not accessible for Millie in NZ. Some are compassionate supplies for a limited trial and very expensive. So we have decided it is necessary to continue with the Givealittle page. We will hopefully have some answers and recommendations for Millie soon. Will keep you updated. We are so so grateful to you all for your help.

Read 4 more updates


Latest donations

  • Jatem

    Jatem on 29 Apr 2020

    $20

    All the best sis xx kia kaha

    $20

    • Janine Hardiman

      Thankyou

  • Guest Donor

    Guest Donor on 29 Apr 2020

    Private

    Private

    • Janine Hardiman

      Thankyou

  • Michelle

    Michelle on 24 Apr 2020

    $50

    Thinking of you all and sending our love to encourage you to stay strong.- Michelle and John

    $50

    • Janine Hardiman

      Thankyou so much Michelle and John

  • Eve

    Eve on 01 Apr 2020

    Private

    Praying for you ❤️

    Private

    • Janine Hardiman

      Eve- you are so kind and thoughtful. You are giving us hope and strength. Thankyou so much

  • Alan

    Alan on 23 Mar 2020

    $200

    Diane would certainly have wanted to help and so do I. Alan

    $200

    • Janine Hardiman

      We are so grateful Alan. Thankyou


Who's involved?

Janine Hardiman's avatar
Created by, and paying to a verified bank account of, Janine Hardiman on behalf of My beautiful daughter Millie

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This page was created on 10 Oct 2019 and closes on 12 Jun 2020.
$32,933 donated

Given by 290 generous donors in around 8 months

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