Aurora supports Rare Disease Day
IDFNZmember Aurora Faauli and her family are happy to raise their hands for Rare Disease Day.
Aurora was diagnosed with an incredibly rare Severe Combined Immune Deficiency (SCID) even before she was born. This life-threatening condition occurs in only 1 in 50,000 new-born babies and is a paediatric emergency.
Aurora Faauli - Her Journey, Her family through SCID
Wellington patient member Aurora Faauli is a tiny fighter. Diagnosed with SCID before she was born, she has survived numerous complications and illnesses as a result of this life- threatening condition.This is a family battle with SCID.
Her family have also had to be strong. They now have two beautiful daughters but back in 2014 they lost a third. Their first daughter, Ariana was born on September 1st, 2014. At first, she seemed healthy and like any other new-born. However, at 2 ½ weeks old she went downhill very quickly. Her mum tried to feed her but she vomited and coughed, turning blue. She stopped breathing and was rushed to Hutt Hospital where she spent three days in intensive care. Josh, her dad, travelled quickly from Christchurch where he had been working to be with his family while the doctors and nurses at the hospital tried to figure out what was wrong with baby Ariana.
After many bloods and tests, they were still nowhere closer to figuring out what was wrong with Ariana. The family was then sent to Starship and it was found that she had SCID. At 3 ½ weeks Ariana was deathly ill, and her father and mother were alone in Auckland with no family support. Ariana had no immunity and because of the exposure she had had to sicknesses and infections, Josh and Monica were told there was nothing that could be done for her. Their tiny daughter was on life support but the infection she was fighting had moved into her lungs and her kidneys were starting to shut down. As a last resort the hospital was hoping to bring some special medication from Australia to try and help her fight the sickness, but she suddenly took a turn for the worse. On the 2nd October, after speaking with their family, Monica and Josh made the heartrending decision to turn off Ariana’s life-support.
After that terrible ordeal, Monica and Josh were told by doctors that they had a one in three chance of their future children having the same deficiency. As a precaution, a special test would be done on their babies while in utero to test for SCID. A needle was inserted through Monica’s belly to take a sample from the baby’s spinal cord. This is just what they did when they were pregnant with their next child, Anayra who did not have SCID and is now a bubbly two-year-old.
Unfortunately, after undergoing this procedure for their next pregnancy, Monica and Josh found that their baby had SCID. As a precaution, at 37 weeks pregnant, the family flew to Auckland and were admitted into hospital. Aurora was born at full term and immediately put into NICU and isolation for a week before she was transferred to Starship. This began the hard, uphill battle of her life. She has had diarrhoea from birth as her stomach can’t handle bottle feeding and has now been put on a continuous feeding tube to help boost her weight and health. At two weeks old she had a bone marrow transplant with marrow donated by her sister, Anayra. Following this she has unfortunately been fighting graft-versus-host where her body is fighting against the transplant. This can be controlled by medication and will hopefully settle down soon. This little girl has also suffered through chest infections, liver problems, her kidneys nearly failing, breathing problems, and has been rushed down to PICU at least nine times since birth. Aurora is now taking steroids to help boost her immunity and control her graft-versus-host. She is behind in her development and isn’t hitting milestones she should because she is lying in bed and has been so sick.
However, although tentative, her family haven’t given up hope for her future. “She’s a fighter,” her father says. “She always finds her way back to us.” Now, as Aurora continues to slowly improve, the family is thinking about their next step. Their next big decision (when Aurora is well enough) is where they will be living when they can leave the hospital. They have family and friends down in Wellington, and Josh still had his job there, but they aren’t sure they want to move too far away from Starship in case Aurora needs to go back in for something. Whatever their decision, they will need a new warm house to move into, a sterile room where everything Aurora needs can be kept, and new furniture that is clean to minimize the risk to her. A car for transport to and from doctors’ appointments and the hospital is also high on the list of priorities for this small family who have been through so much. With Kids Foundation’s support, as well as generous help from the wider community through a soon to be up and running GiveaLittle page, they hope to be able to give Aurora and Anayra everything they need to live full lives and be as healthy as possible. “The small things make us happy now,” Monica says. “Every time the doctor says things are getting a little better, we are happy.”