Latest news with #HouseofHope
West Australian
23-04-2025
- Health
- West Australian
Gary Ablett Jr and wife Jordan share emotional journey of six-year-old son Levi's Menkes disease diagnosis
For over five years, Gary Ablett Jr and his wife Jordan shielded their son Levi's medical struggles from public view, navigating specialists, therapies, and unspoken fears. Now, as Levi turns six, the couple has broken their silence in a raw interview, peeling back layers of grief and resilience tied to a diagnosis. Jordan, 33, has described the moment in May 2020 when doctors identified Menkes disease, a rare genetic disorder disrupting copper metabolism, as a turning point that 'completely changed' their lives, speaking to the Herald Sun. 'It was shocking… of course it was hard to first accept,' Jordan admitted while recalling the prognosis: Neuro-degeneration, connective tissue degradation, and a life expectancy rarely surpassing early childhood. Levi's condition, caused by mutations in the ATP7A gene, manifests in sparse hair, seizures, and developmental delays. Most untreated children die before age three, but copper histidinate injections, started early, offer a fragile lifeline. The medication 'slows the progression,' Jordan said, emphasising that every milestone, like Levi reaching six, feels special. Behind closed doors, the Abletts have grappled with Levi's inability to speak or walk independently. 'He's changed me' Jordan shared in a 2021 interview with the Good Friday Appeal, referencing the constant vigilance against aspiration risks that could send food into his lungs. Regular telehealth check-ins with Melbourne's Royal Children's Hospital punctuate their routine, with respiratory health dominating concerns, according to the same interview. Yet amid the medical jargon, Jordan clings to Levi's 'constant sunshine', as she posted on Instagram, also his laughter, his bond with younger sister Grace, and his quiet determination. 'His life has been a message,' she insisted in the Good Friday appeal article, rejecting pity. In her upcoming memoir One Day At A Time, Jordan details the 'happy and sad tears' of parenting a terminally ill child, framing their journey as a call to cherish fleeting moments, as announced in her October 2024 social media posts ahead of the book's April 2025 release. With Menkes having no cure, the Abletts now channel their energy into advocacy, hoping their story softens the isolation felt by similar families through initiatives like Jordan's 2022-launched House of Hope. Teasing her memoir on Instagram Jordan wrote: 'I am so excited to finally share with you all that I have been working hard behind the scenes for almost one year now, writing my very own book!' 'I can't begin to explain how special this feels for me, and for my family, who have journeyed all of life's highs and lows with me, feeling every single bump and joy along the way. There have been plenty of tears cried while writing this book, both happy and sad tears, but being able to share my story, and hopefully encourage others, has made all 'the feels' worth it. 'I hope that by reading my story, parents of children with a disability will feel less alone, more capable, and will, if they don't already, look at their child through a different lens, seeing them as what they are, a genuine treasure!'
Perth Now
23-04-2025
- Health
- Perth Now
Gary Ablett Jr's wife share news of 6yo son's fatal illness
For over five years, Gary Ablett Jr and his wife Jordan shielded their son Levi's medical struggles from public view, navigating specialists, therapies, and unspoken fears. Now, as Levi turns six, the couple has broken their silence in a raw interview, peeling back layers of grief and resilience tied to a diagnosis. Jordan, 33, has described the moment in May 2020 when doctors identified Menkes disease, a rare genetic disorder disrupting copper metabolism, as a turning point that 'completely changed' their lives, speaking to the Herald Sun. 'It was shocking… of course it was hard to first accept,' Jordan admitted while recalling the prognosis: Neuro-degeneration, connective tissue degradation, and a life expectancy rarely surpassing early childhood. Levi's condition, caused by mutations in the ATP7A gene, manifests in sparse hair, seizures, and developmental delays. Most untreated children die before age three, but copper histidinate injections, started early, offer a fragile lifeline. The medication 'slows the progression,' Jordan said, emphasising that every milestone, like Levi reaching six, feels special. Behind closed doors, the Abletts have grappled with Levi's inability to speak or walk independently. 'He's changed me' Jordan shared in a 2021 interview with the Good Friday Appeal, referencing the constant vigilance against aspiration risks that could send food into his lungs. Regular telehealth check-ins with Melbourne's Royal Children's Hospital punctuate their routine, with respiratory health dominating concerns, according to the same interview. Yet amid the medical jargon, Jordan clings to Levi's 'constant sunshine', as she posted on Instagram, also his laughter, his bond with younger sister Grace, and his quiet determination. 'His life has been a message,' she insisted in the Good Friday appeal article, rejecting pity. In her upcoming memoir One Day At A Time, Jordan details the 'happy and sad tears' of parenting a terminally ill child, framing their journey as a call to cherish fleeting moments, as announced in her October 2024 social media posts ahead of the book's April 2025 release. With Menkes having no cure, the Abletts now channel their energy into advocacy, hoping their story softens the isolation felt by similar families through initiatives like Jordan's 2022-launched House of Hope. Teasing her memoir on Instagram Jordan wrote: 'I am so excited to finally share with you all that I have been working hard behind the scenes for almost one year now, writing my very own book!' 'I can't begin to explain how special this feels for me, and for my family, who have journeyed all of life's highs and lows with me, feeling every single bump and joy along the way. There have been plenty of tears cried while writing this book, both happy and sad tears, but being able to share my story, and hopefully encourage others, has made all 'the feels' worth it. 'I hope that by reading my story, parents of children with a disability will feel less alone, more capable, and will, if they don't already, look at their child through a different lens, seeing them as what they are, a genuine treasure!'
Yahoo
11-02-2025
- Politics
- Yahoo
At long last, Providence pallet shelters are finally ready to open
House of Hope Executive Director Laura Jaworski speaks at the opening ceremony for ECHO Village on Feb. 11, 2025. Seated left to right are Gov. Dan McKee, House Speaker K. Joseph Shekarchi, Providence Mayor Brett Smiley, and Acting Housing Secretary Deborah Goddard. (Photo by Christopher Shea/Rhode Island Current) The long-awaited opening of Rhode Island's first community of temporary homeless shelters was heralded with the brass and drums of a marching band Tuesday as a crowd of 200 homeless service advocates and politicians gathered at ECHO Village. Extraordinary Rendition Band, a protest marching band based in Providence, ushered in the celebration a day before the first group of residents was expected to move into the cabins arranged on a 4-acre site on Victor Street near Route 146. There are 45 cabins in all, each measuring 70 square feet. 'Today we are officially adding this to the portfolio of options for Rhode Island's homeless community,' Gov. Dan McKee told the crowd. When the project was officially announced in January 2024, the opening date was supposed to open by the end of the first quarter. Its original price tag was $3.3 million, with funding coming from State Fiscal Recovery Funds and Community Development Block Grants, as well the city of Providence. But addressing regulatory gaps in the state fire code delayed the work for a year and ultimately pushed the project over budget by $1.3 million. Laura Jaworski, executive director of House of Hope, called ECHO Village's long-awaited opening a bittersweet moment. 'It's really a strange place to be to want to mark the opening of a shelter,' Jaworski said. 'We felt it was really important because there was a lot of hard work that has gone into this project to get us to where we are today — I quite honestly believed we would never make it.' House of Hope is a Warwick-based community nonprofit that will manage the village and connect residents with supportive services including housing and benefits application assistance, job training, substance use recovery and mental health services. Each cabin has enough space to accommodate a twin bed, night stand, and shelves. They are also equipped with climate control, fire and carbon monoxide detectors, extinguishers, a locking door, and two windows. The pallet shelter village also has a community room, along with ADA-approved combination bathroom/shower facilities and a laundry room. House of Hope staff will work out of four office structures. Residents can begin to move in starting Wednesday, Jaworksi told reporters after the ceremony. Move-ins will be in waves, with groups of 10-15 people moving over the next three weeks. Individuals and couples will be selected to live at the site through the state's Coordinated Entry System — a calling system designed to ensure people experiencing housing insecurity have 'fair and equal access' to shelter. Jawroski told Rhode Island Current that priority will be given to people who have been living on the streets for the longest time. The expected length of the stay for residents is expected to last around nine months, but could vary depending on each individual's health and other circumstances and whether there is a more permanent place for them to stay, Jaworski said. Four case workers will be on site from 9 a.m. to 5 p.m. Monday through Friday. 'It's gonna be an individualized process because of the state of the housing crisis here in Rhode Island,' she said. Pallet shelters are shown amid the snow on a lot located off Victor Street in Providence on Tuesday, Feb. 11, 2025. The shelters can expect their first occupants beginning Feb. 12. (Photo by Christopher Shea/Rhode Island Current) Shelving inside a pallet shelter in ECHO Village. (Photo by Christopher Shea/Rhode Island Current) Each ECHO Village cabin is outfitted with a twin bed and end table. (Photo by Christopher Shea/Rhode Island Current) Gov. Dan McKee surrounded by reporters after the opening ceremony for ECHO Village on Feb. 11, 2025. (Photo by Christopher Shea/Rhode Island Current) A smoke detector and sprinkler installed inside one of the ECHO Village cabins. Meeting the state's fire code was one of many factors officials blamed for the delayed opening of Rhode Island's first pallet shelter community. (Photo by Christopher Shea/Rhode Island Current) Resident of ECHO Village will receive a 'wellness pac' in their cabins to provide hygiene supplies. (Photo by Christopher Shea/Rhode Island Current) A trio of pallet shelters seen along the snow. The 70-square foot cabins can house one person per unit, though a couple can share a space. (Photo by Christopher Shea/Rhode Island Current) ECHO Village has one laundry station on site.(Photo by Christopher Shea/Rhode Island Current) Snow had been shoveled away from the front entrances to the ECHO Village pallet shelters on the day of the opening ceremony on Feb. 11, 2025. (Photo by Christopher Shea) The 70-square foot pallet shelters in ECHO Village are located near a Route 146 offramp in Providence. (Photo by Christopher Shea/Rhode Island Current) ECHO Village Unit 11 is shown. (Photo by Christopher Shea/Rhode Island Current) Six pallet shelters are shown on the day of the opening of ECHO Village on Tuesday, Feb. 11, 2025. (Photo by Christopher Shea/Rhode Island Current) Pallet shelters are shown amid the snow on a lot located off Victor Street in Providence on Tuesday, Feb. 11, 2025. The shelters can expect their first occupants beginning Feb. 12. (Photo by Christopher Shea/Rhode Island Current) Shelving inside a pallet shelter in ECHO Village. (Photo by Christopher Shea/Rhode Island Current) Each ECHO Village cabin is outfitted with a twin bed and end table. (Photo by Christopher Shea/Rhode Island Current) Gov. Dan McKee surrounded by reporters after the opening ceremony for ECHO Village on Feb. 11, 2025. (Photo by Christopher Shea/Rhode Island Current) A smoke detector and sprinkler installed inside one of the ECHO Village cabins. Meeting the state's fire code was one of many factors officials blamed for the delayed opening of Rhode Island's first pallet shelter community. (Photo by Christopher Shea/Rhode Island Current) Resident of ECHO Village will receive a 'wellness pac' in their cabins to provide hygiene supplies. (Photo by Christopher Shea/Rhode Island Current) A trio of pallet shelters seen along the snow. The 70-square foot cabins can house one person per unit, though a couple can share a space. (Photo by Christopher Shea/Rhode Island Current) ECHO Village has one laundry station on site.(Photo by Christopher Shea/Rhode Island Current) Snow had been shoveled away from the front entrances to the ECHO Village pallet shelters on the day of the opening ceremony on Feb. 11, 2025. (Photo by Christopher Shea) The 70-square foot pallet shelters in ECHO Village are located near a Route 146 offramp in Providence. (Photo by Christopher Shea/Rhode Island Current) ECHO Village Unit 11 is shown. (Photo by Christopher Shea/Rhode Island Current) Six pallet shelters are shown on the day of the opening of ECHO Village on Tuesday, Feb. 11, 2025. (Photo by Christopher Shea/Rhode Island Current) House of Hope first began pushing for using pallet shelters during the COVID-19 pandemic. The pallet shelters are easily set up to provide emergency shelter for homeless people. Forty-five cabins manufactured by Pallet, a public benefit corporation based in Everett, Washington, were shipped and assembled last February. They sat empty as officials struggled to figure out how the cabins fit into the state's fire and building codes, which had no category for pallet shelters. Officials also couldn't treat them like campsites or dormitories. The gaps in state regulations prompted House Speaker K. Joseph Shekarchi to introduce legislation in January that creates a new type of emergency shelter under the state's building code called Supportive and Versatile Emergency (SAVE) units. Shekarchi's bill, which had its first committee hearing Feb. 4, would allow municipalities to be exempt from the normal fire and building codes for 180 days, so long as a city or town declares an emergency. McKee said he would sign the bill should it clear the General Assembly, though he told Rhode Island Current that as of Tuesday morning he had yet to read the legislation 'I know the speaker pretty well, he's not going to be asking for something that's unsafe,' McKeesaid. Speaking to reporters, the governor said his administration plans to regroup and fully assess what caused ECHO Village's delays to ensure similar projects aren't held up in the future. 'We're a few months behind where we wanted to be, but looking forward you have multiple years of helping people,' McKee said. Help alleviating homelessness, especially during winter months, can't come soon enough, Shekarchi said. He cited the case of Rico Timez Ramy, 48, an unhoused person who, according to the editor of the website Street Sights, regularly slept outside in the Smith Hill neighborhood and reportedly froze to death in January. 'And there are probably others we don't know about,' Shekarchi said. 'We need to do more and we need to do it better.' The Rhode Island Coalition to End Homelessness conducted its annual Point-In-Time count for the U.S. Department of Housing and Urban Development on Jan. 28, but results aren't expected to be released until some time in the summer. At least 2,442 unhoused people across Rhode Island were counted when volunteers conducted an annual survey in late January 2024 — up 35% over the 2023 count. SUBSCRIBE: GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX
Boston Globe
11-02-2025
- General
- Boston Globe
‘We need to do better:' After delays, Rhode Island opens ECHO Village pallet shelters in Providence
'I've been out here for 15 minutes and I'm cold. Imagine sleeping in the cold,' said Speaker K. Joseph Shekarchi. 'This is something to celebrate, but let's not lose sight that people are outside.' Get Rhode Map A weekday briefing from veteran Rhode Island reporters, focused on the things that matter most in the Ocean State. Enter Email Sign Up Shekarchi recalled a homeless individual who slept outside in the Smith Hill neighborhood and allegedly froze to death last month, according to Shekarchi and service providers. He was 48. 'Everyone here: We need to do more, and we need to do better,' Shekarchi said. One of 45 single units at ECHO Village in Providence, Rhode Island's newly opened pallet shelter for individuals and couples who are homeless. Pat Greenhouse/Globe Staff ECHO Village, 45 small, one-room structures on a vacant plot of state-owned land on Victor Street behind the Foxy Lady, has been in the works since at least 2020. In that time, the number of people experiencing homelessness in Rhode Island has more than doubled, from 1,104 people in 2020 to more than 2,400 people in 2024, according to 'This village is more than a roof. It's a path to dignity and change,' said The shelter will have around-the-clock services on-site from House of Hope, one of the state's leading providers of services for homeless people. As the pandemic began in 2020, Jaworski suggested using pallet shelters in a plan she called ' Advertisement The idea to use temporary, rapidly deployable pallet shelters to provide emergency winter housing has been in the works for the last several winters, but the state had failed to identify a location. In October 2022, advocates called on the state to place 30 of these tiny homes at the Pastore Complex in Cranston, but the idea faced swift In all, there were six attempts before the state-owned land was determined to be a viable solution last year. Yet the shelter still faced multiple delays. Despite growing public scrutiny and pressure from advocates, the state has had to address potential public safety concerns — such as building code and fire safety requirements — before opening the 70-square-foot sleeping units. During just With the units sitting vacant for months, the delays have been the subject of frustration among some elected officials. 'It's like you're on a boat, see people drowning, have space on the boat, and say 'I wish someone could help them,'' said Senator Jessica De La Cruz, a North Smithfield Republican. A restroom that is ADA compliant at ECHO Village in Providence. In addition to the 45 one-room units, the project also includes four office units; three hygiene units that include four full baths, and one staff bathroom; one laundry unit; and one large community unit. Pat Greenhouse/Globe Staff This is a large community unit. In addition to the 45 one-room units, the project also includes four office units; three hygiene units that include four full baths, one ADA-compliant bathroom, and one staff bathroom; one laundry unit; and one large community unit. The red tanks on the ceiling - 4 of 6 - are part of the fire-suppression system. Pat Greenhouse/Globe Staff In addition to the 45 one-room units, the project also includes four office units; three hygiene units that include four full baths, one ADA-compliant bathroom, and one staff bathroom; one laundry unit; and one large community unit. Each unit is equipped with fire suppression systems, smoke and carbon-monoxide detectors, heating and cooling units, and fire-retardant paint. Advertisement House of Hope staff will provide on-site case management, housing and benefits application assistance, job training, and health-related services such as substance use recovery and mental health support. Amos House, a shelter and homeless services provider, will partner with House of Hope to provide daily meals to those on site. Individuals who will be staying in the units will be moving in on Wednesday. Providence Mayor Brett Smiley called on his counterparts throughout the state to 'step up.' 'It is our hope that this is the first, and not the last, ECHO Village in Rhode Island. It is our hope that this is the first, but not the last ECHO Village in Providence,' said Smiley. Under Governor Dan McKee's administration, the number of shelter beds for homeless individuals has increased from 800 to about 1,300. But homelessness has also increased, and more work needs to be done, he said. 'There are too many people in Rhode Island, and in the nation, that do not have a bed' to go home to, said McKee. Material from previous Globe articles was used in this report. Follow Alexa Gagosz on Bluesky at . Alexa Gagosz can be reached at
Yahoo
05-02-2025
- General
- Yahoo
$1.3M over budget, Providence pallet shelters to open next week
Pallet shelters are shown amid the snow on a lot located off Victor Street in Providence on Tuesday, Jan. 21, 2025. The community of cabins meant to shelter homeless people is slated to open Feb. 11, 2025. Occupants may move in as soon as Feb. 12. (Photo by Christopher Shea/Rhode Island Current) The grand opening of 45 tiny cabins to provide housing for people with nowhere else to go assembled off Route 146 in Providence is finally coming — and at $1.3 million over budget. Nearly a year after the state's first community of temporary pallet shelters for people experiencing homelessness were constructed, the Rhode Island Department of Housing on Tuesday announced the opening ceremony for ECHO Village will be on Tuesday, Feb. 11. The ceremony will include a guided tour of the site on Victor Street that will be managed by House of Hope, a Warwick community development corporation. So when can ECHO Village expect its first occupants? Ideally by that Wednesday, House of Hope Executive Director Laura Jaworski told Rhode Island Current. 'This is a moment that we have been waiting for,' Jarowrski said in an interview. It's been a very slow process to open the one-room cabins and auxiliary buildings that make up ECHO Village. Part of the reason involves confusion over how the cabins fit into the state's fire and building codes. State Fire Marshal Timothy McLauglin revealed to a legislative panel in December that his office ultimately decided last spring to go with the code used for hotels or dorms, even though the cabins are freestanding structures. It's the kind of confusion House Speaker K. Joseph Shekarchi never wants to see in future shelter projects. Shekarchi on Jan. 22 introduced legislation that creates a new type of emergency shelter under the state's building code called Supportive and Versatile Emergency (SAVE) units. The bill would also allow municipalities to be exempt from the normal fire and building codes for 180 days, so long as a city or town declares an emergency. Shekarchi's bill received its initial hearing by the House Committee on Municipal Government and Housing Tuesday evening, where it was held for further study as is standard practice when legislation is first introduced. 'The unnecessary delay is not something that we need to have, especially at this time of year and this political climate,' Shekarchi told the committee. 'People should not be having to wait as we address this issue.' It's rare when Shekarchi testifies before a committee. House spokesperson Larry Berman said on average the speaker appears three times per year. Ensuring compliance with the state's fire code led the cost of ECHO Village to skyrocket to a projected 40% over its original $3.3 million initial budget. Housing Department spokesperson Emily Marshall on Tuesday confirmed the project was over budget by $1.3 million, due in part to installing fire alarms in each cabin, fire suppression units, and fire retardant paint. The amount includes three outstanding invoices totaling approximately $758,375 now under review, Marshall said. 'As work is ongoing, we do anticipate some additional invoices to encompass the remaining construction work,' she said in an email. 'At this time, we are projecting being approximately $1.3 million over budget on construction, and operating funds have not yet been utilized.' The project's budget included $1.2 million to buy the shelters from Pallet, a public benefit corporation based in Everett, Washington. Around $1 million was budgeted for House of Hope to operate shelters, with an additional $1.1 million for construction costs. 'Please note, this is only an estimate since work is still being completed, and we have not yet received the final invoice,' Marshall said in an email. But state officials had anticipated construction overruns and that the department has reserved unspent pandemic aid to cover the cost, Marshall said. Shekarchi called the cost increase disappointing, but not surprising. 'As projects get delayed, the costs to the state and the developers increase,' he said in a statement. 'I encourage the Department of Housing to work diligently on minimizing these delays and the resulting additional costs moving forward.' Gov. Dan McKee's office did not immediately respond to a request for comment on ECHO Village's overall cost. The long delay has made it challenging to keep the state focused on solving its homelessness problem, Jaworski said. 'The part that is frustrating is we've lost a lot of the why of this project,' she said. 'We've lost sight of the humanity that needs to be happening. We still have a state where hundreds of people are sleeping outside.' SUBSCRIBE: GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX
