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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"


$25,680 donated

Given by 202 generous donors in 8 weeks

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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

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Current situation  17 November 2019

Apologies for the long break without an update. We have had a few tests done in the past month, but the results are taking a long time to come back and due to Millie's critical condition we cannot afford to continue at this rate. Her pain, malabsorption and cyclic weakness are unfortunately only progressing. One of the few results we have had back is that her gastric emptying scan was normal, so it is unlikely pacemaker surgery will be the right option. The plan is for Millie to be admitted to the hospital tomorrow in order to speed up the process of finding and treating her GI and neurological symptoms, as well as stabilising her weight and managing her pain.

We have had years of being let down by the health system and are devastated that it has gotten to this point without any real answers. We know that Millie has EDS and Behcets disease, but we are unsure of the exact way in which these diseases are affecting her body, but that whatever is going on is very serious. We have real hope this admission will be positive and give as at least some indication of what is going on so that we can make the best decision in her treatment. At present specialists in America, IVIG and stem cells are being discussed. Despite the pain and stress, Millie is remaining positive, holding on to the hope that one day she will be well and can look back on this hideous experience as something that strengthed her character.

We will keep you posted, thank you all for your continuous support,

Janine and Millie

Read 1 more update


Latest donations

  • Connie

    Connie 3 days ago

    $30

    Such a brave girl! Love to you and whanau.

    $30

    • Janine Hardiman

      Thankyou for your kindness

  • Guest Donor

    Guest Donor 6 days ago

    $50

    all the very best Millie, you dont know us but we want to help you and your family. wishing you moments of happiness each day and a speedy recovery. much love.

    $50

    • Janine Hardiman

      Thankyou so much for your kindness-it is so heartfelt

  • Christine

    Christine on 02 Dec 2019

    $100

    A huge hug to you Millie, along with your loving family. Our very best wishes from Christine, David, Madeline and Annabel (SHCS)

    $100

    • Janine Hardiman

      Thankyou so much for your kindness and support. We are truly grateful

  • Guest Donor

    Guest Donor on 29 Nov 2019

    $30

    $30

    • Janine Hardiman

      Thankyou

  • Jo

    Jo on 28 Nov 2019

    $35

    Good luck Millie, hope this helps.

    $35

    • Janine Hardiman

      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 9 Jan 2020.
$25,680 donated

Given by 202 generous donors in 8 weeks

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