Ana-Carolina

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

This page has closed, she has another here: https://givealittle.co.nz/cause/bring-ana-carolina-home

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 😊