The little girl who hasn't eaten in two years: Five-year-old born with devastating health problems must learn to eat again after being fed through a tube

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When Becky Holland first watched her little girl Eleanor Faith, five, grasp a ball for the first time, she never thought something so simple could bring her such happiness.

Mrs Holland, 34, was 18 weeks pregnant when she and her husband Rodney, 34, found out their unborn little girl had spina bifida and Arnold Chiari II Malformation - a hole in her spine and a brain malformation leading to speaking, growing and eating difficulties.

'We were numb because we didn't know what the future would hold for us,' Mrs Holland told Daily Mail Australia.

Rough start to life: Eleanor Faith Holland, five, was born with spina bifida and Arnold Chiari II Malformation

'Numb': Becky Holland, 34, and her husband Rodney found out Eleanor Faith had the defect at 18 weeks 

Moments after the Lismore couple's baby was born, she was rushed to intensive care where she remained for six weeks with a breathing tube. 

The Holland couple remained by their newborn's side for 12 hours a day talking to her and holding her, as well as watching her go in and out of surgery to close the hole in her spine, remove the fluid from her spine and receive a shunt in her brain to relieve the pressure.

'She was about 3.5 kilos and had really dark black hair and for me I felt very powerless - she was my first baby and I wanted to celebrate,' Mrs Holland said. 

'I went back to the room after I'd had her and I was alone. I had carried this baby for nine months and suddenly she was gone and I couldn't be with her - it was really hard as a mum to not have your baby when you hear others crying around you and knowing yours was downstairs on her own with someone she didn't know.'

'I was alone': Shortly after birth Eleanor Faith was given a breathing tube and rushed to intensive care 

Do what you can: Eleanor Faith was given a shunt to relieve pressure in both her back and brain and has since grown to be relatively painless and recently learnt to drive her power wheel chair (pictured cheering) 

Once home, Eleanor Faith was suffering from excessive sweating and an inability to control her temperature, as was again faced with more brain surgery. 

She was in a lot of pain and needed a shunt in her back to bring relief which takes years to take effect - but the couple have watched their baby go from struggling with sickness and pain and hospital visits to a brand new little girl. 

'She loves people, going out, Playschool and she can count to five - and she can understand nearly everything you say,' Mrs Holland said. 

'She loves people': Mrs Holland says her daughter loves going out, Playschool and can count to five  

Becoming independent: Eleanor Faith can drive around in her car and uses an iPad to communicate sentences

Long way to go: Eleanor Faith can speak single words but due to her brain malformation had to get a feeding tube which makes her vomit from two to ten times a day - and she has lost her ability to eat 

'She can speak lots of single words and she has an app she uses to communicate with on her iPad so she can ask for drinks and to watch TV and do craft...and she can have an argument with you on it as well.'   

Eleanor Faith received a power wheel chair 12 months ago and is finally able to drive around and be independent - but she still has a long way to go. 

'When she was sick Eleanor Faith struggled to eat and couldn't keep the food down due to the malformation in her brain so she needed a feeding tube and developed an oral aversion to food, so the next step is learning to eat,' Mrs Holland said.

Off to Adelaide: To learn to eat again and wean off the feeding tube, the Lismore-based little girl will need to attend a private program in Adelaide which will cost, including additional costs, upwards of $15,000 

'She loved her food': Eleanor Faith loved food but as it is a learned skill, she has lost her ability to do so 

'She used to eat and she loved her food and we have pics with it all over her face - but eating is a learned skill and because it's learned it can disappear which is what has happened with her unfortunately.'

Eleanor also vomits from twice to 10 times a day - sometimes more from the feeding tube.

Mrs Holland hopes Eleanor Faith will soon be able to learn to eat for the first time in two years, but to do so will need to attend a feeding clinic in Adelaide.

The clinic can help the little girl wean off her feeding tube but it comes at a cost.

'We have a program in place': Eleanor Faith is currently attending meal times and learning about food 

Seven days of learning: The program in Adelaide will require seven days of weaning off the tube 

'We have a program in place where we have meal times just like other families and have food play and lots of touching food and shapes and holding food and tastes if she wants,' Mrs Holland said.

'When she reaches the point that the therapists are happy with we will go to Adelaide (most likely in the next few months) to do a program where they'll do a food wean over seven days.' 

The feeding program fee is $3,500 and hospital stay costs $1,100 per night. 

Additional costs include accommodation, specialists fees and ongoing support following the program - all contributing to an estimated total cost of $15,000. 

'It's challenging': Mrs Holland says it isn't easy but that it's amazing celebrating the small things 

Happy family: Mrs Holland and her husband have since had 15-month-old Tobias (left) who she describes as a 'happy bouncy little boy' who loves to climb and adores his older sister 

So far over $1,000 has been raised, with the family creating a Pozible page - Eleanor's dream is to eat - to raise funds for the coming program, as well as awareness for other families going through a similar experience.

'It's challenging having a child with a disability but it's amazing celebrating the small things - when she learnt to grasp a ball that was massive in my world...hearing her sing in the car for the first time and watching her drive around in her wheelchair for the first time were both amazing moments for us too,' Mrs Holland said.

'She decided to drive from the back room to the TV and she made that choice on her own - she's five now and she wants to do things herself and I think it's really nice that she can make her own decisions and go and touch the trees or leaves.'

'She's such a happy little girl and she loves life, her new little brother Tobias and brings so much goodness wherever she goes...and for others in the same situation they need to know that they are doing a great job and to follow their hearts.'