EXCLUSIVE: Little girl who can't walk, is non-verbal and suffers multiple seizures a day is deemed 'not disabled enough' and has had her funding CUT, overwhelmed parents claim

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The parents of a little girl who suffers several seizures each day and will need ongoing care for the rest of her life has been devastated by health bureaucrats' decision to cut her NDIS funds by almost a third. 

Luella Oudshoorn was just 11-weeks-old when she was diagnosed with West Syndrome, an extremely rare type of epilepsy which results in severe developmental delays and has no cure.

Unlike other toddlers her age, two-year-old Luella still can't walk, independently stand, is non-verbal, needs help feeding herself and and just started to crawl a few days before Christmas.

Her parents Erin and David are hopeful their little girl will overcome the odds and eventually reach those milestones.

The Sydney couple recently announced Luella will become a big sister in June next year, but what should have been joyous news was tarnished by Luella's condition taking a turn for the worse.

Little Luella's epilepsy deteriorated just days after her parents Erin and David announced they're expecting their second child

Luella has West Syndrome, an incredibly rare type of epilepsy which results in severe developmental delays and has no cure

The toddler has in recent weeks began suffering more seizures and spasms in a progression towards Lennox Gastaut Syndrome, one of the most severe forms of epilepsy.

Her mother has forced to give up work to become Luella's full-time carer and described the latest heartbreaking setback as 'robbing us of the light that so fleetingly glimmers in our lives'.

'Luella is the most gentle and sweetest little girl who is full of love,' Ms Oudshoorn  told Daily Mail Australia.

'We see moments of her personality shine through but it depends on the day.

'Every day is very different. For the most part, she's a happy girl but the seizures aren't good and cause destruction to the brain each time.

'We do a lot of physical therapy in the hope she'll reach those milestones but there's a long and gruelling road ahead regardless.

'She will need ongoing care for the rest of her life.' 

Despite the deterioration in Luella's condition, Ms Oudshoorn claimed health officials had reduced her funding under the National Disability Insurance Scheme..

Ms Oudshoorn claims she was told that the toddler wasn't 'disabled' enough to receive more subsidised care.

Luella (pictured being comforted by mum Erin)  has started suffering more seizures and spasms in a progression towards Lennox Gastaut Syndrome, one of the most severest forms of epilepsy.

'They didn't believe Luella needed a nurse to help look after her, despite reports from her neurologists,' Ms Oudshoorn said.

'Luella needs monitoring 24-7 as she has seizures throughout the night.

'Children like Luella need the extra care. It's unfair and unreasonable to expect the mum to do it all on her own.

'My husband is the sole breadwinner for the family and works long hours, leaving me to care for Luella on my own.'

'It's infuriating that the NDIS expects us to carry the weight without providing enough support.'

She issued a desperate plea to bureaucrats making the decisions.

'Stop making our life harder, families shouldn't have to prove how disabled their child is.'

The NDIS insists it continues to provide 'significant funding' in Luella’s NDIS plan and strongly denied claims funding was cut by a third.

Erin describes daughter Luella (pictured with dad David) as the most gentle and sweetest little girl who is full of love

'The NDIA recognises the difficult challenges the Oudshoorn family are facing and the NDIA is committed to ensuring Luella has the disability-related supports she needs,' a spokeswoman told Daily Mail Australia.

'It is important to note that Luella’s plan does include funding for care from a nurse. It would be wrong to state that the plan does not include funding for a nurse.

'During the planning process, the NDIA will review all information provided at the time and make decisions on reasonable and necessary supports. 

'If sufficient evidence is provided to the NDIA to substantiate the requested levels of additional support, including for nursing care, the NDIA would then be able to consider further changes to the plan. 

'The NDIA had not received such evidence for consideration in Luella’s most recent plan review.'

The spokeswoman added the family has been given a Request for a Review of Decision form to complete if they would like to further review.

For now, Ms Oudshoorn says she's given up her fight for more funds to focus more on Luella.

But she stands by her claims about the funding claims and lashed out at the time-consuming and frustrating efforts to deal with the public service.

'While it may not seem much, I assure you when funding is difficult at the best of times, to then have some random person behind a desk with no medical experience, but especially no specific experience with the disability at hand, making life altering decisions for a patient, is (in my opinion) quite honestly, a joke,' she posted on an Instagram page set up to detail her daughter's journey.

'For parents navigating this foreign path, it’s honestly a minefield. 

'Frustratingly you end up obtaining more info from parents who have walked this ambivalent road before you, rather than from NDIS direct.

'As if designed to be overly time consuming & frustrating, so that parents simply give up or settle for far less than what is required & more importantly, deserved, for their child. Not because they don’t care, but because they simply lack time & energy to put up a fight, along with the disability battlefield they already tread.'

Ms Oudshoorn remains hopeful Luella (pictured doing therapy) will walk and talk one day

Luella suffered up to 250 seizures a day up until a year ago.

Her parents had tried dozens of anti-epileptic treatments without any success before turning to cannabidiol, a cannabis oil which has relieved some of Luella's symptoms.

Her mother described the treatment as a life changer and has given Luella more cognitive ability and motor function, despite her recent progression towards Lennox Gastaut Syndrome.

'It's not a cure but it does help as it allows her the maintain and retain things she does learn,' Ms Oudshoorn told Daily Mail Australia. 

'At her worst, she would have up to 250 seizures a day, which have been reduced to down to 30-40 by using CBD oil.

'She spent the first six to eight months of her life in and out of hospital so it's something to try to avoid as much as we can.'

While the oil has alleviated the symptoms, the only treatment option to genuinely improve Luella's condition is surgery but it is a major and risky procedure which would involve removing half of Luella's brain.

Even then, there's no guarantee Luella's condition will improve or that the seizures will stop. 

Mention of the risky surgery makes Ms Oudshoorn 'sick to my stomach.' 

'Doctors say there is a 80 per cent cent chance of a positive outcome,' she said.

'It's not a option I'm ready to consider yet because of the risks involved. They only have one shot at surgery.'

Luella (pictured) was 11-weeks-old when she was diagnosed with West Syndrome

 Ms Oudshoorn was suffering post-natal depression when she first saw signs something wasn't right with Luella at eight-weeks-old.

Genetic tests on her unborn second child that weren't offered when she was pregnant with Luella have come back all clear so far. 

'It's layered with a range of emotions- we're scared, nervous and excited at the same time,' Ms Oudshoorn said.

'Luella has changed my outlook on life. My perception of what was important before has changed.

'It's hard in a sense, thinking why is this happening to us.' 

Extensive testing on her unborn child have ruled out Ms Oudshoorn and her husband as genetic carriers for epilepsy or any other genetic condition.

'While this news brings extreme relief and solace that persevering for this information was worth all the cage rattling, it frustratingly doesn’t bring us any closer to determining a cause for Lulu,' she said.

Erin (pictured right with daughter Luella) is pregnant with her second child due in June 

She has set up an Instagram page Little Lulu Love dedicated to her daughter's journey to raise awareness about epilepsy and the funding battles affected families face, where she recently detailed Luella's deterioration. 

'Her body involuntary becomes statuesque, and then slowly a hostile takeover transcends through her body, ripple like in effect, minus the beauty,' she wrote.

'As the seizure worsens, her eyes roll up to the right & then into the back of her head. She also becomes non responsive.'

Friends have rallied around the family amid the uncertain road ahead for Luella, setting up an online fundraiser to relieve the financial stress upon the family arising from her ongoing treatment and care. 

'The time has now come for Erin and Dave to get a little assistance,' the page states.

'Now that Erin is pregnant it will soon become impossible for her to carry Luella, to rock her to sleep, to bath her. She will need some help while Dave is working.' 

Luella recently suffered devastating setback as her parents prepare for arrival of second child

Friends have rallied around the David and Erin amid the uncertain road ahead for Luella

Ms Oudshoorn still has high hopes for Luella's future, despite the uncertainty ahead.

She also continues to pray for a miracle a cure for her daughter's condition will be found.

'I would love her to walk and talk one day, that would be amazing,' she told Daily Mail Australia.

''But it could take years for that to happen. All we want is for Luella to enjoy life as much as possible surrounded by lots of love, no matter what happens.

'We're just focused on taking each day as it comes and smothering her with love.' 

Erin Oudshoorn has become a full-time carer for Luella as her second pregnancy progresses