The parents of a girl who suffers several seizures every day and will need continued care for the rest of her life have been devastated by the decision of health bureaucrats to reduce their 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 that causes severe developmental delays and is untreated.
Unlike other young children her age, two-year-old Luella still can’t walk, she’s not verbal, she needs help feeding, and she’s just started crawling a few days before Christmas.
Her parents, Erin and David, hope that her little one will overcome the difficulties and finally reach these milestones.
The Sydney couple recently announced that Luella will become an older sister in June next year, but what should have been good news was overshadowed as Luella’s condition worsened.
Little Luella’s epilepsy worsened a few days after her parents Erin and David announced that they were expecting their second child.
Luella has West Syndrome, an incredibly rare type of epilepsy that causes severe developmental delays and is untreated.
In recent weeks, the child has begun to experience more seizures and spasms in a progression to Lennox Gastaut Syndrome, one of the most severe forms of epilepsy.
Her mother has been forced to quit her job to become Luella’s full-time caregiver and described the latest heartbreaking setback as “stealing the light that shines so fleetingly in our lives.” .
“Luella is the kindest and sweetest girl full of love,” Oudshoorn told the Daily Mail Australia.
“We see moments of his personality shining, but it depends on the day.
‘Every day is very different. For the most part, she is a happy girl, but the seizures are not good and cause destruction to the brain every time.
“We are doing a lot of physical therapy in the hope that it will reach these milestones, but there is a long and exhausting road ahead, regardless.
“He will need constant attention for the rest of his life.”
Despite the deteriorating state of Luella, Ms Oudshoorn claimed that health officials had reduced their funding under the National Disability Insurance Plan.
Ms Oudshoorn claims she was told the child was not “disabled” enough to receive more subsidized care.
Luella (pictured by Mother Erin) has begun to suffer more seizures and spasms in a progression to Lennox Gastaut Syndrome, one of the most severe forms of epilepsy.
“They didn’t think Luella needed a nurse to help her care for her, despite reports from her neurologists,” Oudshoorn said.
“La Luella needs surveillance 24 hours a day, 7 days a week, as she has seizures all night.
‘Children like Luella need extra care. It is unfair and unreasonable to expect the mother to do it all on her own.
“My husband is the only breadwinner in the family and works long hours, leaving me to take care of Luella on my own.”
“It’s outrageous that NDIS expects us to carry the weight without providing enough support.”
He made a desperate request to the bureaucrats who make the decisions.
“Stop making life more difficult for us, families should not show the disability their child has.”
He NDIS insists it continues to provide “significant funding” to Luella’s NDIS plan and strongly denied that funding was reduced by a third.
Erin describes her daughter Luella (pictured with father David) as the kindest and sweetest girl who is full of love.
“The NDIA acknowledges the difficult challenges facing the Oudshoorn family and the NDIA is committed to ensuring that Luella has the disability-related support she needs,” a spokeswoman told the Daily Mail Australia.
“It’s important to note that Luella’s plan includes funding for a nurse’s care. It would be wrong to say that the plan does not include funding for a nurse.
“During the planning process, the NDIA will review all information provided at this time and make decisions about reasonable and necessary support.
“If sufficient evidence is provided to the NDIA to corroborate the additional levels of support requested, including nursing care, the NDIA could consider further changes to the plan.
“The NDIA had not received such evidence to be considered in the review of Luella’s most recent plan.”
The spokeswoman added that the family has received a request for review of the decision to fill in if they would like to review it further.
For now, Ms Oudshoorn says she has given up her fight to get more funds to focus more on Luella.
But he maintains his claims about funding applications and has rejected frustrating and time-consuming efforts to tackle public service.
“While it may seem small, I assure you that when funding is difficult at best, then having a random person behind a desk with no medical experience, but mostly no specific experience with the disability in question, making decisions “It’s a joke,” he said.
“It simply came to our notice then.
“It simply came to our notice then.
“As if it were designed to be too time consuming and frustrating, so parents simply give up or settle for much less than is required and, most importantly, deserved, for their child. Not because they don’t care. “It simply came to our notice then.
Mrs. Oudshoorn hopes that Luella (pictured doing therapy) will walk and talk someday
Luella suffered up to 250 seizures a day until a year ago.
Her parents had tried dozens of unsuccessful antiepileptic treatments before resorting to cannabidiol, a cannabis oil that has relieved some of Luella’s symptoms.
Her mother described the treatment as a life change and has given Luella more cognitive ability and motor function, despite her recent progression to Lennox Gastaut Syndrome.
“It’s not a cure, but it helps, as it allows you to maintain and preserve the things you learn,” Oudshoorn told the Daily Mail Australia.
“In the worst case, I would have up to 250 seizures a day, which have been reduced to 30-40 with the use of CBD oil.
“He spent the first six or eight months of his life in and out of the hospital, so it’s something we should try to avoid as much as we can.”
Although the oil has relieved the symptoms, the only treatment option to really improve Luella’s condition is surgery, but it is an important and risky procedure that would involve removing half of Luella’s brain.
However, there is no guarantee that Luella’s condition will improve or that the seizures will stop.
The mention of risky surgery causes Ms Oudshoorn to “get a stomach ache”.
“Doctors say there is an 80% chance of a positive outcome,” he said.
“It’s not an option I’m willing to consider because of the risks involved. They just have a chance at surgery.
Luella (pictured) was 11 weeks old when she was diagnosed with West Syndrome
Mrs. Oudshoorn was suffering from postnatal depression when she first saw signs that something was wrong with Luella at eight weeks.
So far, genetic testing for her second unborn child, which was not offered to her when she was pregnant with Luella, has become clear.
“It’s full of emotions, we’re scared, nervous and excited at the same time,” Oudshoorn said.
‘La Luella has changed my outlook on life. My perception of what was important before has changed.
“In a sense, it’s hard to think why this is happening to us.”
Comprehensive tests on her unborn child have ruled out Ms Oudshoorn and her husband as genetic carriers of epilepsy or any other genetic disease.
“While this news brings extreme relief and consolation because persevering with this information was worth the whole cage probe, frustratingly doesn’t come close to determining a cause for Lulu,” he said.
Erin (pictured right with daughter Luella) is pregnant with her second child in June
She has created an Instagram page for Little Lulu Love dedicated to her daughter’s journey to raise awareness about epilepsy and funding battles for affected families, where she recently detailed Luella’s deterioration.
“Her body involuntarily becomes sculptural, and slowly a hostile takeover transcends her body, undulating as indeed less beauty,” she wrote.
“As the seizure gets worse, his eyes turn to the right and then to the back of his head. He also becomes numb.
Friends have gathered around the family in the middle of the uncertain path for Luella, arranging an online fundraiser to alleviate the family’s financial stress from their constant treatment and care.
“Now it’s time for Erin and Dave to get some help,” the page states.
“Now that Erin is pregnant, it will soon be impossible for her to carry Luella, twin her to sleep, bathe her. She will need help while Dave is working.
Luella recently suffered a devastating setback as her parents prepared for the arrival of their second child
Friends have gathered around David and Erin in the middle of the uncertain path for Luella
Mrs Oudshoorn still has high hopes for Luella’s future, despite the uncertainty ahead.
She also continues to pray for a miracle to be found for the care of her daughter’s condition.
“I would love for him to walk and talk someday, that would be amazing,” he told the Daily Mail Australia.
” But it can take years for that to happen. All we want is for Luella to enjoy life to the fullest surrounded by a lot of love, no matter what.
“We’re just focused on taking every day as it comes and drowning it with love.”
Erin Oudshoorn has become a full-time caregiver for Luella as her second pregnancy progresses
