Ana-Carolina

Cause page created in the Health category by Dynamic Visual Output Ltd for "Ana-Carolina de Moraes Lobo Bircham"

  • $16,557.00 donated
  • 204 generous donors

Ana-Carolina a little girl living in Starship Hospital's Paediatric ICU for nearly 4 years - She needs your help to go home!

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Sick Kids Family Support Disability

Thank you for taking the time to look at Ana-Carolina’s Give A Little page.

Ana-Carolina has been a patient in the Paediatric ICU in Starship Hospital in New Zealand since October 2013 when she was 5 months old. She is 4 years old now!

We are the first family in New Zealand to have a child living in the Paediatric ICU (PICU) for almost 4 years! And we will never be able to describe precisely how challenging and dismaying it is to live and raise a child in an artificial environment, that no one should stay in for more than a few days (the time needed to be stable).

Ana-Carolina is a warrior and for her we have learned how to survive every day around pain, death, crying, in a medically critical environment that does not allow children to sleep, play, develop or have the most basic human needs.

Ana-Carolina, regardless of her disabilities, is just a child, she is happy, smart and we cannot believe how much she knows now, even being denied the opportunity to be living at home with her family, as would happen in most developed countries around the world.

Ana-Carolina has a very rare condition, a chronic form of Guillan-Barre Syndrome - CIDP (Chronic inflammatory demyelinating polyneuropathy) and a genetic condition CMT 1B. She is possibly one of the few children in the world to have this combination.

For Ana-Carolina, this means she is paralysed and requires the 24/7 support of a ventilator to breathe.

Ana-Carolina receives monthly IVIg treatments which reduce the inflammation around her nerves, ameliorating her symptoms and helping her to make movements with her fingers and face. It makes her stronger, happier and very talkative! Essentially, it prevents her from deteriorating, plus it gives her a chance of a better future with the current development of new drugs and treatments in USA and other countries.

Despite this, Ana-Carolina is a 4-year-old little girl who loves watching Peppa Pig, The Cat in the Hat, Super Why (the list is long) and having stories read to her. She enjoys music, bubbles being blown and playing with arts and crafts. She also loves wearing pretty clothes – the more bling the better, and having her birthday party :)

Ana-Carolina’s health is stable. She has not had one cold, or bed sore, or even nappy rash in over 1300 days and she is in excellent health and growing well.

We want to be able to take Ana-Carolina home to live with us as a family, but we are facing enormous challenges within our health system, which is preventing us from being able to do this. In the UK, Canada, the USA and Australia there are many fully ventilated children living at home and there are processes and guidelines in place to support their care.

In New Zealand, there are no fully ventilated children living at home.

Having the appropriate guidelines and processes in place will be the first step in overcoming the challenges we are facing (and this is something we are trying to work through with the necessary agencies) – the next step will be securing the funding to ensure that Ana-Carolina has a home to come home to, and this is where we need your help.

The full cost of this will not be provided for by the Ministry of Health, and we are expecting to contribute to this. Unfortunately, we have not been able to continue with work as we have needed to care for Ana-Carolina around the clock. Ana-Carolina needs a modified van to get around, a lift in the house and other house modifications and ongoing costs like special food and supplements from the USA. We also need assistance with living expenses, as neither of us has been able to work for the last few years.

We have created this Give A Little page in the hope that you may be able to help us, with whatever the size of your donation, in bringing Ana-Carolina home.

ICU is not a place for a little girl to live…...please help us get Ana-Carolina home ASAP!!!

Warm regards,

Lots of Love xxx

Peter, Elane and Ana-Carolina

Are there any other ways you could help?

Meals for the parents, who spend 20 hours a day at the hospital, have little time for meal preparation and needs to eat at odd hours throughout the day and night

Pro Bono Legal help, to assist with a variety of issues.

If you have any ideas how to help or support us with any of these please contact us via Facebook or e-mail https://www.facebook.com/AnaCarolina.cause

Thank you for all your help, there is a little girl who will benefit enormously from your generosity 😊

Page created by:

Ana-Carolina is a 4 years old little girl that has a inflammatory neuropathy living in Starship hospital’s intensive care unit on a ventilator. She has a tracheostomy tube to help her breath and is a happy and interactive child in no pain and on no real medications. She is stable, on regular IVIg treatment that prevent her to deteriorate and help her to cope with her condition. She has been gain some small, but significant new movements and we are hopeful for new treatments in a few years time! Most days she can be seen walking around the hospital on a portable ventilator with her parents and the PICU team, enjoying the sights and sounds of the many interesting people. She has severe paralysis, but she can move her face, eyes, mouth, nose.. As well as her fingers and toes. Since last years she start to breathing for a few wee minutes and move her head side to side and it give us so much hope! Her parents, Elane and Peter live at the hospital 7 days a week helping care for her. She gets out of bed for her walkies, activities and cuddles every day. She watches Peppa Pig, Mike the Knight, The Cat in the Hat as her favourite TV shows, indicating with her eyes what books, toys and DVDs she wants to watch. She is growing up in an intensive care unit, which is a very artificial and demanding environment and any help you could give to support her to go home would be enormously appreciated:)

All funds raised benefit:

Ana-Carolina de Moraes Lobo Bircham

Funds will be paid to a verified bank account of Dynamic Visual Output Ltd on behalf of Ana-Carolina de Moraes Lobo Bircham.

  • $16,557.00 donated
  • 204 generous donors

$16,557 donated

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This cause page was created on 02 Sep 2014 and closes at 23:59 NZST (UTC +12:00) on 31 Dec 2017.

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