URGENT!! Fighting for her life & future - Micheline (10 years), Vanuatu
Micheline, 10 yrs from Vanuatu, recovering from a rare auto-immune disease, burns, infections & severe malnutrition needs URGENT help!Auckland
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Micheline is currently recovering from significant burns, infections, malnutrition as a result of a rare auto-immune disease (Pemphigus Vulgaris) and needs URGENT help.
We are reaching out for your assistance. Please read this story.
We are a family from Germany, who have been sailing around the world for a few years and our base is now in Auckland, New Zealand.
On a recent adventure last September through the South Pacific, we arrived at the beautiful island of Pentecost in Vanuatu. https://www.vanuatu.travel/en/provinces/penama-province/pentecost
A local man approached us and asked if we had medication on board to help his sick grand daughter. We had no idea what to expect and of course agreed to come to the village to see what we can do. We found a little girl in a grave physical condition, barely responding.
It was the most awful state to see another human being in, especially a child, and a profound moment in our lives that has impacted us so deeply and changed us personally forever.
We had to get her immediately to a hospital. She was air lifted to Vila shortly after, being moved and transported, an incredibly painful experience for her and a miracle that she survived.
Micheline was malnourished (19.5kg!), dehydrated, her blood tests indicated that she is lucky to be still alive. We found her just in time. She would have not lasted much longer.
More than half of her body was covered in skin lesions and also some burns which we aren't sure where they originated from. Her lesions were covered in dirt and flies. She was barely responsive.
We arranged for blood and skin tests to be sent to Australia (Vanuatu doesn't have labs for these type of tests), and discovered that Micheline suffers from a very rare auto-immune skin disorder Pemphigus Vulgaris. https://en.wikipedia.org/wiki/Pemphigus_vulgaris
This disorder causes significant blisters resulting in skin lesions and, if not treated, results in death. Sadly, we learned that it appears her mother died from the same disease 5 years ago. She didn't receive treatment. This is most tragic, because even though this disorder can't be cured, it is very treatable if addressed without delay.
In Micheline's culture black magic is a custom, practiced frequently, and the family was hoping that their cultural rituals would help her. http://dailypost.vu/opinion/letters_to_editor/black-magic-and-witchcraft/article_24111eed-9878-5974-ab66-a723de07afc7.html
Micheline was left untreated for 4 months from when her symptoms first appeared and her health deteriorated fast. During this time she had to tolerate unbelievable pain, physically and mentally but she never gave up and was holding on to her young life.
You can imagine how this impacted us personally, and how this created a conviction to help this human being survive and live a life worth living. We cannot walk away and leave her to her destiny which will result in her death.
Micheline was at Vila Hospital for the first view weeks. She received blood infusions, antibiotics and we managed to build a network that was able to assist (key organisations were Marine Reach NZ, DEBRA NZ and local medical staff). Resources in the hospital were limited but ensured Micheline'survival. The main challenge was (and still is) to keep her wounds clean and avoid secondary infections. These were hard & painful weeks and difficult to write about here and if you read the updates pages, you might get an idea what ordeal this was for everyone involved and how horrendous this was for Micheline.
Micheline’s body had many open lesions as a result of her illness and very deep pressure-wounds from lying many months without moving. Every two days dressings had to be changed which was extremely painful and traumatizing for her even under the influence of morphine.
Micheline has not been walking for many months. She is so weak and all her muscles have faded away. She will need to learn how to walk again.
We quickly realised that this task to treat her condition was enormous and specialised, and that we urgently needed to transfer her to a western country's hospital.
The big question that constantly came up in our minds was "If it was your child, what would you do?"
We hit many roadblocks, and had someone even tell us to let her die. We couldn't walk away and are now doing what we can to get her life back on track.
A specialised hospital in New Calendonia offered to take Micheline. The only hospital who would have her. We tried New Zealand and Australia but with no luck.
Micheline has been there now for 2 weeks and is getting the best treatment we could hope for. Her illness results in the body producing blisters, many large ones, which when they open up, leave horrendous lesions on her body. To treat this, Micheline needs to be in a sterile environment where immune suppressing medication can be administered, and large doses of steroids. The goal is to have her lesion free for at least 2 weeks with 80% of her skin healed.
This is no easy task and 2 weeks into treatments so far, still challenging getting the medication dosage right to get the healing process triggered. We understand that this takes time, and totally trust the amazing medical team in New Caledonia. Micheline is making progress. She is having daily physiotherapy, has psychological support, gets some daily homeschooling. Her days are busy, she is smiling again.
In addition, Micheline's father Haston is also there. He has never been away from Pentecost, and this was a cultural shock for him. This is a massive paradigm shift for him. He is a humble man, there have been tears and he is starting to understand Micheline's condition. No doubt this massive realisation has taught him what guilt feels like.
He has been taken 'under the wing' by some local residents ensuring he is emotionally supported and has contact to others from his culture and is generally supported. It's quite a miracle in itself to see him developing through this situation.
Dr Sebastian has gone back to Vienna, but remains Micheline's main medical guardian. The specialists in New Caledonia are keeping him in the loop about any progress and challenges.
Tobias is back in New Zealand for now to be with his family but in daily contact with Micheline, Haston and the medical team.
OUR CURRENT CHALLENGE
Previously when we started this page we asked for financial assistance as well as contacts to your networks, dressing materials etc.
We have had incredible responses to our plea. In the short time we launched this site we received enough funds to pay for Micheline's hospital care and auto-immune suppressing medication. We have topped up the 5% service fee deducted from donations and have paid for all other expenses (e.g. dressing material, food, accommodation, airline tickets etc) ourselves.
What is critical for us right now is ensuring Micheline's continuous treatment at New Caledonia hospital.
We pay approximately NZD2000 per day for her care plus her auto-immune suppressing medication which currently costs NZD13,460 but may increase if she requires more.
We need further funds to ensure we can sustain her continuous care to get her to a point where she is well enough to live back in Vanuatu under medical supervision. Realistically, we need to ensure she can stay in New Caledonia at least 3 or 4 months.
The additional challenge is the fact that she has lost mobility. She needs extensive rehabilitation and physiotherapy so that she can walk again and has control of her toileting needs. There is a rehabilitation clinic opposite the hospital and we are in discussions whether they would be able to facilitate her needs and associated costs.
Our plea for financial support continues and we are asking that anyone reading this, please share this story with the people in your networks.
Micheline is a strong little girl. She is smart, patient and grateful; we fell in love with her spirit and want her to have the life that she deserves. But we need your support. Please get involved and help.
NOTE ABOUT YOUR DONATION
People have been asking us how they can help Micheline and how they can support us.
We want you to know that all funds raised will solely go towards Micheline's recovery, the management of her auto-immune disorder and her family's expenses.
It has been estimated, that treatment in a western country and all associated costs could easily end up costing around NZD800,000, hence we have set up this site.
Any expenses that we and our supporters incur will be covered by ourselves.
In addition, every donation made, incurs a 5% service fee which goes to Give a Little. We are covering this fee ourselves so that every dollar donated will be allocated to this purpose.
Micheline is still in critical condition and there are still risks that could impact Micheline's survival chance. If Micheline or her family for some reason no longer require support, all remaining funds will be donated to Vila Hospital.
We see Micheline's incredible resilience and strength to survive. This fuels our strength and commitment to walk this journey with her and continue fighting with and for her.
Thanks for reading this story. Your support, kindness and care means a lot to us!
Nicole & Tobias
Nicole & Tobias Janke's involvement
Micheline is currently in a hospital in New Caledonia and is recovering from significant burns, skin lesions and malnutrition as a result of a rare auto immune disorder and medical neglect. The girl was found a month ago on an island in a near death state. She survived, her condition is now being treated. It's proving challenging and we anticipate that this will take several months to get her back to a state where she can function independently.
This initiative aims to raise funds to assist with medical expenses in New Caledonia and expenses in Vila once she is able to go back to Vanuatu.
Use of funds
Immediate use of funds
+Pressure mattress, medical expenses
+Micheline's & her family's expenses in Vila & overseas
+Ongoing local expenses and supplies as needed
This is our last update on this Givealittle page. Micheline is doing well and will be moving to Espiritu Santos Island in Vanuatu to live with her aunt, Australian uncle and their 13 year old son. The aunt is currently homeschooling her son and has commited to providing the same learning opportunities to Micheline.
Micheline will need to travel to New Caledonia 4 times a year. We are starting a new Givealittle site to start assisting her with the next chapter in her life.
These trips to New Caledonia will be costly. A day at hospital is NZD$ 2000 and we are fully commited to enable her to continue on her path of recovery.
We want to thank you all for your incredible support over the last few months.
This story isn't over and we would be most grateful if you could please continue to follow and support us Micheline on her jouney.
Please also view the Gallery as it has new photos and also a break down of all costs that we so far accumulated. It has always been our intention to be transparent, and will continue to do so.
Tobias & Nicole
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This page was created on 19 Oct 2018 and closed on 28 Feb 2019.
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