Community support needed to get disabled child home
Posted at 4:25pm Tuesday 07 May, 2019
This bedroom needs renovations before disabled child Ana-Carolina de Moraes Lobo Bircham, aged six, can be brought home from hospital.
A doorway to a new life for a disabled six-year-old and her parents could be opened in Orewa with support from the Hibiscus Coast community.
Ana-Carolina de Moraes Lobo Bircham, who cannot breathe, speak or move unaided, has been in Starship Hospital's pediatric intensive care unit since she was five months old. Her parents, Elane and Peter, hope to bring their daughter, who was paralysed by Guillain Barre syndrome, to live in Orewa next month. It will be the first time she has had the opportunity to live outside the hospital, but making it happen will require help that the couple hope the community can provide.
Having both given up their jobs to become Ana-Carolina's full time carers, Elane and Peter's financial position is precarious and they have been forced to put their home in Auckland up for sale.
A house in Orewa has been made available by a charitable group, CCS Disability Action, which normally rents the property as a holiday house for people with disabilities. Early supports team leader Liz Stenning says Ana-Carolina's situation is unique and required an ‘out of the box' solution. The family is being charged less than market rent, with further discounts to be provided depending on the value of improvements to the house.
Elane describes Liz as ‘her angel', who has provided the key to a better life.
She says after five years, she and Peter dream of being parents to their little girl in a real home. The hospital, with its 24/7 lights, sounds of ambulance sirens outside and the sadness of living alongside people dying or in pain, is stressful and far from home-like.
What has kept the couple going are signs of hope – it was not certain whether Ana-Carolina would live, but she is a fighter and is even showing signs of recovery, communicating with blinks. She can now move most of her fingers and toes and is regaining use of some facial muscles.
“It has been so hard, but now we have hope,” Elane says. “Orewa is new to us, but offers a wonderful opportunity. We can take Ana-Carolina to the beach and shops, sit outside in the sun and have fresh air every day.”
The small bach is clean and accessible, but needs renovation to make it suitable for Ana-Carolina's very specific needs. Some equipment will be funded by the family, who has a Givealittle page, and the Auckland District Health Board will provide a care package to support the transition.
However, a lot more is needed so the family is asking for help from local businesses, community organisations or individuals. Already, offers of assistance have come in from companies such as DVS Home Ventilation, which donated a heat pump and DVS system.
Vinyl flooring, insect screens and an oven are among the other things needed, along with assistance from a plumber and electrician and storage (see Wish List below).
Without these changes, the family may not be able to make the move to Orewa because the house would not be a safe environment for Ana-Carolina.
“We are never going to be ‘normal', but we want the normal things of life for our child – a house, a bedroom and a place where she can experience family life. It sounds simple as they are things many people take for granted, but for us that would be a dream come true.”
If you can help, contact Elane, email email@example.com or phone 027 280 8068. The Givealittle page is called Bring Ana-Carolina Home.