Latest news with #Lennox-GastautSyndrome
NZ Herald
26-07-2025
- Politics
- NZ Herald
Deportation threat: 7-year-old Joshua Meets' fight to stay in New Zealand
The thought of having to leave everything they've built keeps them going in their years-long fight. 'This turned me into a world-class hurdler because I'm just jumping from one hoop to another,' she said. 'It's not a Kiwi thing to do. It's such an accepting society, but then we get pushed to the side for having a kid with special needs.' Joshua Meets had his visa denied by Immigration NZ because of his rare form of epilepsy. 'This is home and this is life' The Meets family had contributed to vital gaps in the workforce and community in the years they had been on Kiwi soil, Ingrid Meets said. She is a commerce and social studies teacher at Mahurangi College, and her husband is an apprentice builder. If Joshua were to return to South Africa, it would significantly harm his well-being and his quality of education, she said. 'New Zealand just means freedom for my family. 'It just gives us all a new life, the boys can excell and they won't be discriminated against. We are safe.' Her three boys, Matthew, Joshua, and Daniel, have lived in New Zealand longer than they lived in South Africa. 'They've got no connection to South Africa. 'Although we are a South African family and we still speak Afrikaans, they started schooling here, and they have their friends here. 'This is home and this is life for them.' Meets said she never imagined that she would have to become an advocate. 'When the system remains silent, I can't stay quiet. 'I am Joshua's voice, but also a voice for all the other families facing this bureaucratic nightmare.' A Givealittle page and a petition have been set up to aid the family in their fight. The fight against deportation Joshua's family kicked off their time in New Zealand after they were all given three-year visas to enter the country in 2020 without any issues. They said they did not know the severity of their son's condition on their arrival. He was just 2 when they were granted visas, and he was seizure-free after being weaned off his seizure medication. After two years in New Zealand, he was diagnosed with Lennox-Gastaut Syndrome, a severe form of epilepsy. In 2022, the family applied for the 2021 Resident Visa, a pathway to residence for certain temporary visa holders affected by Covid-19 and border closures. Meets said Immigration New Zealand deemed Joshua was not of an acceptable standard of health and was not eligible for a waiver. After multiple letters of concern, the residence visa application was officially declined. In March 2024, they appealed to the Immigration and Protection Tribunal, which weighed up the case and found there were special circumstances that favoured the family staying. The case was sent to the Minister for Immigration to make the final decision, but Associate Minister Chris Penk declined their appeal. Erica Stanford, the Minister of Immigration, also declined the appeal. Since then, the rest of Joshua's family have been given valid visas that will allow them to stay in New Zealand until 2029. Joshua's application for a new visa was declined, and his current one expired this month, so now his family must make a final appeal on humanitarian grounds. This decision will be made by the Immigration and Protection Tribunal, rather than the minister, Meets said. Joshua Meet's student visa application was declined after law changes. What can they do? Meets said they were well within their rights to appeal the deportation decision on humanitarian grounds. 'We have handed in our appeal document, and we've got 42 days to complete, get proof and get support letters and build a case that we can now present.' The appeal goes to the Immigration Protection Tribunal – now the family's second round of dealing with it. 'We had such a good outcome the first time, and they said that our case definitely held merit and special circumstances, and even with that then we still got the decline.' She said that with this appeal, the tribunal would make the final decision, and it did not need to be referred back to a minister, which might improve their chances. Joshua Meets has a complex seizure disorder, developmental delay and is non-verbal, so he attends a special school. 'I understand that immigration is a policy,' Meets said. 'But I think there should be a more humane or humanitarian side to it. You can't judge people just on a tick-box system. 'Let's say it was an easy ride for us and we get residency, and myself or one of the boys gets in an accident and then they need special schooling. They won't be seen as a burden on the system. 'It's just a timing issue. The Government knows what they're going to expect with Joshua. So why is he being called a burden on the system? 'If they accept me to come for a very important role in being a teacher and being able to be good enough to teach Kiwi kids, then my kids should also be accepted in society just like any other normal kid,' Meets said. Joshua Meets had his visa denied by Immigration New Zealand due to his rare form of epilepsy. Photo / Supplied The family's life has been put on pause as they wait for a final decision. 'Once you lodge the appeal, it takes quite a while. 'That appeal might take another six to nine months for the final decision. But it does mean that we live on a very high nervous system during that time because it just feels like there's no finality. 'We can't save money for a house deposit. We can't plan for our future.' Acceptable Standard of Health policy The Meets family are urgently calling for an exemption to New Zealand's Acceptable Standard of Health (Ash) policy, which they deem to be discriminatory. 'We call for the end of the discriminatory Ash policy, which unfairly penalises migrants and refugees with disabilities or medical conditions and their families, breaching New Zealand's international obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD),' the family said on their petition. Stanford said the Government strengthened the health requirements for dependent children of people on temporary visas to ensure more consistency in the immigration system from March this year. 'In recent years, a spike in enrolments of children of temporary migrants in our schools has resulted in an increase in children from this cohort with very high learning needs,' Stanford said. 'This has put significant strain on an already oversubscribed learning support system, preventing other children from getting the support they need.' Sign up to The Daily H, a free newsletter curated by our editors and delivered straight to your inbox every weekday.
The Advertiser
30-06-2025
- Health
- The Advertiser
Working with sick children is not for the faint of heart
Voice of Real Australia is a regular newsletter from Australian Community Media, which has journalists in every state and territory. Today's is written by Southern Inlands editor Sally Foy. Last week, my son was airlifted to Sydney Children's Hospital at Randwick after he became seriously unwell with Influenza A. He is 13 and has Lennox-Gastaut Syndrome, which is a diagnosis that includes daily seizures that are not able to be controlled by medication, severe intellectual impairment (he's non-verbal), Autism, ADHD and a number of other additional challenges to his everyday life. So when my child's temperature went up, and his seizures began to spiral, it required an immediate response. As you can imagine, a child with the diagnosis I've outlined above requires lots of time spent in the hospital. However, this was our first stint as inpatients for quite a few years, as he has been relatively stable for some time now. After having a bit of a break from inpatient stays, being thrown back into the hospital environment again reminded me why, when faced with the challenge of parenting an unwell child, I've always been so grateful to live in Australia. Say what you will about the NSW health care system, the people who work inside the hospitals always leave me somewhat lost for words by their dedication and care. From the doctors to the nurses, specialist staff, admin workers, allied therapists, etc, every person I've ever come across at Sydney Children's Hospital in Randwick appears to me as though they have truly answered a calling. I'm sure they have days where their work is just work, but from where I have sat over many years now as a scared and somewhat helpless parent, these people and their selflessness when it comes to the vulnerable children in their care are the reason I don't fall apart. I just wanted to drop this note to say thank you. This is also an opportunity to make the public service announcement that while in the ICU, I was told that the week prior, the entire floor was filled with previously healthy kids who had to spend sometimes up to seven days intubated due to Influenza A. This is a particularly nasty strain. Take the time to speak to your doctor and get your child vaccinated if you haven't already. Voice of Real Australia is a regular newsletter from Australian Community Media, which has journalists in every state and territory. Today's is written by Southern Inlands editor Sally Foy. Last week, my son was airlifted to Sydney Children's Hospital at Randwick after he became seriously unwell with Influenza A. He is 13 and has Lennox-Gastaut Syndrome, which is a diagnosis that includes daily seizures that are not able to be controlled by medication, severe intellectual impairment (he's non-verbal), Autism, ADHD and a number of other additional challenges to his everyday life. So when my child's temperature went up, and his seizures began to spiral, it required an immediate response. As you can imagine, a child with the diagnosis I've outlined above requires lots of time spent in the hospital. However, this was our first stint as inpatients for quite a few years, as he has been relatively stable for some time now. After having a bit of a break from inpatient stays, being thrown back into the hospital environment again reminded me why, when faced with the challenge of parenting an unwell child, I've always been so grateful to live in Australia. Say what you will about the NSW health care system, the people who work inside the hospitals always leave me somewhat lost for words by their dedication and care. From the doctors to the nurses, specialist staff, admin workers, allied therapists, etc, every person I've ever come across at Sydney Children's Hospital in Randwick appears to me as though they have truly answered a calling. I'm sure they have days where their work is just work, but from where I have sat over many years now as a scared and somewhat helpless parent, these people and their selflessness when it comes to the vulnerable children in their care are the reason I don't fall apart. I just wanted to drop this note to say thank you. This is also an opportunity to make the public service announcement that while in the ICU, I was told that the week prior, the entire floor was filled with previously healthy kids who had to spend sometimes up to seven days intubated due to Influenza A. This is a particularly nasty strain. Take the time to speak to your doctor and get your child vaccinated if you haven't already. Voice of Real Australia is a regular newsletter from Australian Community Media, which has journalists in every state and territory. Today's is written by Southern Inlands editor Sally Foy. Last week, my son was airlifted to Sydney Children's Hospital at Randwick after he became seriously unwell with Influenza A. He is 13 and has Lennox-Gastaut Syndrome, which is a diagnosis that includes daily seizures that are not able to be controlled by medication, severe intellectual impairment (he's non-verbal), Autism, ADHD and a number of other additional challenges to his everyday life. So when my child's temperature went up, and his seizures began to spiral, it required an immediate response. As you can imagine, a child with the diagnosis I've outlined above requires lots of time spent in the hospital. However, this was our first stint as inpatients for quite a few years, as he has been relatively stable for some time now. After having a bit of a break from inpatient stays, being thrown back into the hospital environment again reminded me why, when faced with the challenge of parenting an unwell child, I've always been so grateful to live in Australia. Say what you will about the NSW health care system, the people who work inside the hospitals always leave me somewhat lost for words by their dedication and care. From the doctors to the nurses, specialist staff, admin workers, allied therapists, etc, every person I've ever come across at Sydney Children's Hospital in Randwick appears to me as though they have truly answered a calling. I'm sure they have days where their work is just work, but from where I have sat over many years now as a scared and somewhat helpless parent, these people and their selflessness when it comes to the vulnerable children in their care are the reason I don't fall apart. I just wanted to drop this note to say thank you. This is also an opportunity to make the public service announcement that while in the ICU, I was told that the week prior, the entire floor was filled with previously healthy kids who had to spend sometimes up to seven days intubated due to Influenza A. This is a particularly nasty strain. Take the time to speak to your doctor and get your child vaccinated if you haven't already. Voice of Real Australia is a regular newsletter from Australian Community Media, which has journalists in every state and territory. Today's is written by Southern Inlands editor Sally Foy. Last week, my son was airlifted to Sydney Children's Hospital at Randwick after he became seriously unwell with Influenza A. He is 13 and has Lennox-Gastaut Syndrome, which is a diagnosis that includes daily seizures that are not able to be controlled by medication, severe intellectual impairment (he's non-verbal), Autism, ADHD and a number of other additional challenges to his everyday life. So when my child's temperature went up, and his seizures began to spiral, it required an immediate response. As you can imagine, a child with the diagnosis I've outlined above requires lots of time spent in the hospital. However, this was our first stint as inpatients for quite a few years, as he has been relatively stable for some time now. After having a bit of a break from inpatient stays, being thrown back into the hospital environment again reminded me why, when faced with the challenge of parenting an unwell child, I've always been so grateful to live in Australia. Say what you will about the NSW health care system, the people who work inside the hospitals always leave me somewhat lost for words by their dedication and care. From the doctors to the nurses, specialist staff, admin workers, allied therapists, etc, every person I've ever come across at Sydney Children's Hospital in Randwick appears to me as though they have truly answered a calling. I'm sure they have days where their work is just work, but from where I have sat over many years now as a scared and somewhat helpless parent, these people and their selflessness when it comes to the vulnerable children in their care are the reason I don't fall apart. I just wanted to drop this note to say thank you. This is also an opportunity to make the public service announcement that while in the ICU, I was told that the week prior, the entire floor was filled with previously healthy kids who had to spend sometimes up to seven days intubated due to Influenza A. This is a particularly nasty strain. Take the time to speak to your doctor and get your child vaccinated if you haven't already.
Time of India
15-06-2025
- Entertainment
- Time of India
Khloe Kardashian's noticeably fuller lips spark buzz during family day out with Tristan Thompson and their two kids
Khloe Kardashian and Tristan Thompson. Image via:Khloe Kardashian turned heads during a recent outing with ex Tristan Thompson and their two children, True and Tatum, as she debuted a noticeably plumper pout. The family moment, captured during their daughter's tennis lesson in Calabasas (per Daily Mail), quickly caught public attention. And not just for the rare co-parenting appearance, but also for Khloe's dramatic beauty transformation. While fans buzzed over her enhanced lips, the reality star appeared unfazed, focusing on quality time with her children and ex-partner. Khloe Kardashian steps out with Tristan Thompson and kids, flaunts bold new look that turns heads Khloe Kardashian. Image via: khloekardashian/ Instagram Dressed in a body-hugging pale pink top and high-waisted denim, Khloe Kardashian looked confident as ever, her glowing matte makeup topped off with glossed black shades. But it was her significantly fuller lips that sparked a wave of online chatter. Many speculated whether she'd undergone a cosmetic enhancement recently, especially since she hasn't publicly addressed the change. Meanwhile, former NBA star Tristan Thompson looked relaxed in an all-black ensemble as he carried their son Tatum, who turns three next month. True, 7, was all smiles in a sporty tennis outfit as she enjoyed her lesson. Although Khloe and Tristan have long moved on from their romantic relationship, the two have shown commitment to building a stable, drama-free environment for their kids. Their rare public outing highlighted just that. In fact, Khloe's dedication to family extends beyond her two children. She welcomed Tristan's younger brother, Amari Thompson, into her household after the death of their mother in 2023. Amari, who lives with Lennox-Gastaut Syndrome, recently performed at a dance recital that had Khloe beaming with pride. 'I am so proud of this young man,' she wrote on Instagram. 'Amari is so so happy.' Khloe Kardashian and Tristan Thompson kids with Amari. Image via: realtristan13/Instagram Khloe also opened up on her podcast Khloe in Wonderland about her strict parenting style, especially when it comes to sleepovers. 'I don't let my kids sleep anywhere,' she said. 'Times are different, so I won't let my daughter, or my son... I watch too much Dateline.' The protective mom also confessed she's dreading the thought of being an empty nester, joking she might 'shave [her] head and go nuts or buy a ton of animals. ' While she admitted to subtly 'brainwashing' her kids into believing living next door to their grandmother is the norm, her devotion was most evident in her heartfelt tribute to True's 7th birthday: 'You gave me a reason to keep going, to rise above the hard days... In my darkest moments, you were the brightest light I had.' Also Read: BIG3 opener explodes in violence as Dwight Howard, Lance Stephenson clash in heated fight Regardless, Khloe's new look has been the talk of the town with social media buzzing, but praise for the former couple is also underway as they have prioritized their kids.
USA Today
12-06-2025
- Politics
- USA Today
Supreme Court sides with teen with epilepsy in disability discrimination case
Supreme Court sides with teen with epilepsy in disability discrimination case At issue: a student was receiving only about 4 hours of instruction a day, less than her nondisabled peers, because of a lack of accommodation for her disability. Show Caption Hide Caption Supreme Court hears arguments on judges' block on Trump birthright EO The justices heard arguments on whether its ok for judges to universally block President Donald Trump's birthright citizenship executive order. WASHINGTON − The Supreme Court on June 12 unanimously sided with a disabled student trying to sue her school for not doing enough to accommodate her rare form of epilepsy, a decision that could make it easier for families to seek damages under the Americans with Disabilities Act. The justices said a lower court used the wrong standard when rejecting the discrimination lawsuit. The case, A.J.T. v. Osseo Area Schools, was being closely watched by disability rights groups who say the courts have created a 'nearly insurmountable barrier' for help sought by schoolchildren and their families. But school officials across the country worry that making lawsuits easier to win will create a more adversarial relationship between parents and schools in the difficult negotiations needed to balance a student's needs with a school's limited resources. Seizures prevent attending school before noon In this case, Gina and Aaron Tharpe said they spent years asking Osseo Area School District to accommodate their daughter's severe cognitive impairment and rare form of epilepsy called Lennox-Gastaut Syndrome. Her seizures are so frequent in the morning that she can't attend school before noon. A previous school in Tennessee shifted Ava's school day so it started in the afternoon and ended with evening instruction at home. But the Tharpes say her Minnesota school system, where she is currently enrolled, refused to provide the same adjustment. As a result, she received only 4.25 hours of instruction a day, about two-thirds of what nondisabled students received. Judge says school didn't do enough A local judge said in 2021 the school district's top concern hadn't been Ava's needs; instead, they were concerned with a desire to keep employees from having to work past the traditional end of the school day. The district was required to provide more instruction under the Individuals with Disabilities Education Act. But while a federal judge backed that decision, the court said the Tharpes couldn't also use the Americans with Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973 to seek compensatory damages and court order to permanently set the hours of instruction. Section 504 is the law that started school-based ''504 plans'', a central tool for providing accommodations to students with disabilities. More: For students with disabilities, what's the difference between IEPs and 504 plans? The St. Louis-based 8th U.S. Circuit Court of Appeals likewise said their hands were tied because of a 1982 circuit decision – Monahan v. Nebraska − that said school officials need to have acted with 'bad faith or gross misjudgment' for suits involving educational services for children with disabilities. The Tharpes 'may have established a genuine dispute about whether the district was negligent or even deliberately indifferent, but under Monahan, that's just not enough,' the appeals court said. More: Will a Texas-led legal fight over gender dysphoria threaten disabled student protections? School said there was no intentional discrimination Hundreds of district court decisions across the country have been litigated under that standard, with most of them ending in a loss for the families, according to Tharpes' attorneys. Those courts were unfairly using a tougher standard than 'deliberate indifference,' which is the bar for damages in disability discrimination cases based on educational services, their attorneys argued − with the support of the Justice Department. Attorneys for the school district argued the ADA and the Rehabilitation Act prohibit only intentional discrimination, which is not what happened here. They also say the school did not show 'deliberate indifference.' Although the school declined to provide after-school support at Ava's home, officials said they offered other measures to accommodate her needs while 'effectively utilizing scarce resources shared among all students, including others with disabilities.' The court's decision revives, but does not settle, the Tharpe's lawsuit.
Epoch Times
29-04-2025
- Health
- Epoch Times
Supreme Court May Rule for Epileptic Student Alleging School Denied Special Accommodations
The Supreme Court on April 28 seemed sympathetic to an epileptic student's family that is suing a Minnesota school district, alleging that the school illegally denied special accommodation. The oral argument in A.J.T. v. Osseo Area Schools became heated when the attorney for the district accused the other lawyers at the hearing of 'lying' about the position she was arguing, an accusation she subsequently withdrew. The U.S. solicitor general's office argued in favor of the family's position. The student, known as A.J.T. and by her first name, Ava, is suing through her parents, who are identified in court papers as A.T. and G.T. Ava suffers from Lennox-Gastaut Syndrome, a rare kind of epilepsy, according to the family's Ava has intellectual limitations and experiences seizures during the day. The most severe seizures happen in the morning, but after that 'she's alert and able to learn until about 6 p.m.' She also needs assistance with walking and toileting. The family argued in the petition that the school district applied a stricter test to the circumstances than was required, which would make it more difficult for the family to succeed with a claim. Related Stories 1/20/2025 5/30/2024 The family filed suit under several federal statutes, including the Individuals with Disabilities Education Act (IDEA), which guarantees that all children receive a 'free appropriate public education.' The Americans With Disabilities Act (ADA) and the Rehabilitation Act also provide protections for disabled individuals. Before Ava's family moved to Minnesota in 2015, her public school district in Kentucky met her needs, including home instruction late in the day. Her new school district in Minnesota, Osseo Area Schools, 'refused to accommodate her,' denying evening instruction and giving 'a series of shifting explanations,' the petition alleged. In the beginning, the district said it did not want to set a bad precedent and then later stated that educating at home 'would be too restrictive,' while at the same time saying it needed more 'data' to rationalize a 'programming change,' the petition said. In the first three years of living in Minnesota, Ava received two fewer hours of daily instruction than nondisabled students received. Ava's parents launched an IDEA complaint with the Minnesota Department of Education. An administrative law judge held that the district violated the IDEA. The judge ruled that instead of prioritizing the child's educational needs, the district was more concerned with maintaining 'the regular hours of the school's faculty.' The judge directed the district to provide evening instruction. The school district appealed to the federal district court. Around the same time, Ava's parents sued the district under the ADA and Rehabilitation Act, asking for an injunction to 'permanently secure [Ava]'s rights to a full school day,' along with compensatory damages for the mistreatment she experienced, according to the petition. The federal district court affirmed the ruling in favor of Ava under the IDEA, finding that she needed 'more than 4.25 hours of schooling a day.' The court found that 'extending her instructions day until 6 p.m. and including compensatory hours of instruction' was 'the appropriate remedy' under the IDEA. However, the court ruled against Ava with regard to the ADA and Rehabilitation Act claims, reasoning that she had failed to demonstrate that the district acted either with 'bad faith or gross misjudgment,' the petition said. A panel of the U.S. Court of Appeals for the Eighth Circuit affirmed. After acknowledging that the family had produced evidence demonstrating that the Minnesota district had been 'negligent or even deliberately indifferent' in denying the reasonable accommodations the Kentucky district provided for years, the panel held it was 'constrained' by the circuit court's 1982 ruling in Monahan v. Nebraska that created the bad-faith-or-gross-misjudgment standard. In the Third and Ninth Circuits, the evidence Ava presented would have been strong enough to survive a motion to dismiss, but in the Eighth Circuit and four other circuits 'embracing Monahan's uniquely stringent standard,' it wasn't, the petition said. In June 2024, the full Eighth Circuit denied a request for rehearing. During the oral 'The defendant must have acted with discriminatory intent. Monahan correctly described that intent as bad faith, which is the longstanding term for actions done for an improper reason, here, disability,' the lawyer said. In the ADA, Congress 'spelled out reasonable accommodations' and 'barred damages without intent for employers and altogether for hotels and hot dog stands.' Reversing Monahan 'would expose 46,000 public schools to liability when, for 40 years, they have trained teachers, allocated budgets, and obtained insurance all in reliance on Monahan,' Blatt said. Some of the justices seemed taken aback by Blatt's suggestion that the Supreme Court should apply a tough standard in the case, an argument they said they had not anticipated. After Blatt said her side defines bad faith as 'discriminatory intent,' Justice Amy Coney Barrett said that 'would be a sea change' in disability discrimination lawsuits. Blatt replied it would only be 'a sea change in terms of liability.' Barrett said, 'a sea change in terms of liability is a pretty big sea change,' adding that Justice Ketanji Brown Jackson pointed out during the oral argument that 'no circuit has adopted your rule.' Justice Sonia Sotomayor raised the possibility that the district may have violated the Supreme Court's procedural rules by not adequately explaining the nature of its argument during the court's required briefing process in the lead-up to the oral argument. 'It would have been nice to have known that we were biting off that big a chunk,' the justice told Blatt. Blatt said her side's arguments had not changed. 'What is a lie and inaccurate is that we ever said in any context that this court should take the same language and define it differently depending on context. That is not true. There is no statement. They [are] adding words to our mouth,' she said. Justice Neil Gorsuch asked Blatt to confirm that she believed the family's attorney, Roman Martinez, and the attorney from the U.S. solicitor general's office 'are lying.' Blatt replied, 'at oral argument, yes, absolutely.' Gorsuch told the lawyer, 'I think you should be more careful with your words, Ms. Blatt.' Blatt replied that the two other attorneys 'should be more careful in … mischaracterizing a position by an experienced advocate of the Supreme Court, with all due respect.' A few minutes later, Blatt withdrew her accusation. Martinez said Blatt acknowledged that the district is 'trying to get rid of the reasonable accommodation claims that people in this country have enjoyed for decades.' 'This is a revolutionary and radical argument that has not been made in this court and that she's trying to get you to decide on the basis of essentially no briefing.' Martinez said disability rights groups 'would have rung a five-alarm fire' if they had realized what the district was seeking. The Supreme Court is expected to rule on the case by the end of June.
