Janine Hayward chats to her daughter, Arike, who is going home for the first time since she was born. Arike has a rare genetic lung condition. Picture: Cindy Waxa/ANA Pictures

Little Arike Hayward will be turning one next week and will be able to celebrate at home. 

Arike was born with a rare genetic lung disease, ABCA3, which causes difficulty in breathing and she needs to be assisted by a ventilator. 

Her mother, Janine Hayward, said she and her husband Henrico were elated to have their little girl come home. 

“I am nervous and excited. We know what it’s like here and all the nurses are here. We will still have nurses but they have not been with her, it will be difficult. You’re not taking a newborn baby home and you getting not one new member to your family but five members (with the nurses). It will be a quite difficult experience, but we are thankful the medical aid is giving us a chance to take her home.” 

Janine said they would have nurses working round the clock to look after Arike. 

“She needs to be on oxygen 24/7 and needs to be looked after around the clock. After she was born they thought she swallowed some water, but they did some tests and when she was four months they sent here here from Netcare N1 City. 

"The tests needed to go to England and we waited a long time for the results to come back, but when they came back it showed she had ABCA."

Arike’s doctor, Dr Fiona Kritzinger, said the only way to cure the disease was by a transplant, but said they offered the little girl treatments to give her the best quality of life. 

“We hope in time she will be one of those kids that will improve with age. We hope one day she can get a lung transplant, she is doing okay and we hope that will be possible in future. 

“Although she got attention, love and care here, it’s not the same as being with her family. It will be a big challenge for the family, they deserve the credit for being willing to take her home.”