Latest news with #supportFamilies
Yahoo
3 days ago
- Health
- Yahoo
Dad of Scottish boy with terminal illness forced to sell family home amid call for help
The parents of a Scottish boy with a rare condition have sold their home while shelling out thousands of pounds on his treatment. Six-year-old Jamie Tierney suffers from rare muscle wasting disease Duchenne muscular dystrophy (DMD). His dad, also Jamie, has called on more support to help families with terminally ill children. The 33-year-old said making his family homeless was the best options amid the difficult circumstances they find themselves in. The family can put money from the sale towards treatment for Jamie. READ MORE: Exact time Edinburgh thunderstorm to hit over weekend as capital set for washout READ MORE: Holiday chaos as Edinburgh flights cancelled on second day of strikes However, dad Jamie believes there should be a body set up to support families navigate the difficulties a terminal diagnosis brings - from accessing benefits, to help with housing. Jamie, 33, from Dunfermline, says the family home became unsuitable for his son as they are now staying with different family members while they wait to hear if they will be given a council house, reports the Record. They receive support from the Muscular Dystrophy UK charity, and the NHS, as well as carers' allowance, but have to deal with each organisation individually, and Jamie believes a streamlined service would make it easier for families. Jamie's call for change comes after the family were denied the chance for Jamie junior to get a wonder medication which is provided free to the NHS. The family has headed abroad on a number of occasions for Jamie to receive treatment. Givinostat, a groundbreaking new life-extending treatment which slows the progress of the condition, has been cleared for use in the UK and is being used in England. But Scottish health boards have not given the drug to any patients through an early access programme, despite patients south of the border benefitting from it. Jamie said: "We sold our family home for many reasons - it was a townhouse with too many stairs, completely unsuitable for Jamie. We needed to find a way to give him independence. "Jamie's needs are increasing year by year. Our street is on a hill, and watching the kids play there breaks my heart - knowing Jamie can't join in this summer. "We need to keep money for future treatments and medical needs for Jamie. I think there should be supportive pathways for families who are in this situation and to aid them with options and help as currently we are jumping through hoops. "We were told we were the last family accepted on a clinical trial in the U.S. We were petrified but ready to move for Jamie. It fell through - we were devastated." Jamie's complex condition gradually weakens all the muscles in the body and affects one in 5,000 boys. It also has a life expectancy of around mid-20s. The family have travelled to both the US and Mexico in the search for potential treatment options as they have fundraised tirelessly through raffles and help from family and friends. Jamie added: "As of this Friday, we're technically homeless. We can't buy again. My wife had to give up work to care for Jamie, and I'm in the early stages of building a new business that just about keeps us afloat. Join Edinburgh Live's Whatsapp Community here and get the latest news sent straight to your messages. "Housing are trying to help, but we're told we just meet the criteria of 'homeless'. Yes, we could rent privately but a suitable ground-floor property would cost double our old mortgage. "The system isn't built for families in extreme, complex situations and when you don't fit the system the system forgets you. How are families supposed to survive like this? I think there's certainly got to be some sort of help. "If we weren't in this situation my wife and I would both be working. She is no longer working and the stress and worry on your child's health affects your work. I'm in a first year start up struggling to support us. "If we had to go private rent it would financially cripple us. We are self funding Jamie's treatments with fundraising but fundraising has become harder and harder for us. We just feel sorry for other families in this situation. "There's families that are being affected every day. I wouldn't wish this on anyone. We would live on the streets for Jamie to be healthy, but the system doesn't seem to consider us." You can donate to their GoFundMe page here. The Scottish Government said: "We have every sympathy with the Tierney family and the hardships they're facing. We want disabled people and carers to get the support they are entitled to, making sure the application process is as straightforward as it can be. "Child Disability Payment is designed to mitigate some of the additional costs of caring for a disabled child or young person and we have a fast-track application route for people who have a terminal condition. "We have also transformed financial support for unpaid carers in Scotland, in recognition of the impact caring can have on a family's finances. "Local authorities will be provided with £15 billion this financial year for a range of services, including housing options services - an advice process councils use when someone approaches them with a housing problem."
The Independent
20-06-2025
- Health
- The Independent
Kate breaks silence to praise children's hospices after missing Royal Ascot
The Princess of Wales has lauded the "life-changing work" of children 's hospices across the UK, just days after her absence from Royal Ascot. In a heartfelt tribute, Kate praised the vital support offered by the institutions dedicated to caring for society's youngest at the end of their lives. She highlighted how these hospices also succeed in "lifting spirits through laughter, fun and play". Her commendation comes as she continues to balance her public duties following her cancer treatment. This was the main reason cited for her surprise decision to miss Royal Ascot on Wednesday. Since announcing in January she is in remission, the princess has been gradually returning to public duties. Her appearances have increased in recent weeks, attending three high-profile events – Trooping the Colour, the annual Order of the Garter service, and a visit to a V&A storage facility in London. It is understood Kate is trying to find the right balance as she fully returns to public-facing engagements that have featured an element of flexibility since her cancer diagnosis. Kate's written message, posted on social media ahead of the end of Children's Hospice Week this weekend, said: 'No parent expects to hear that their child has a serious health condition that could shorten their life. 'Sadly, this is the reality faced by thousands of families across the country, leaving them heart-broken, fearful of the future and often desperately isolated.' Speaking in her role as royal patron of two children's hospices, she added: 'Being able to access the support of one of the UK's 54 children's hospices means they don't have to face that future alone. 'As patron of East Anglia's Children's Hospices and Ty Hafan Children's Hospice in South Wales, I have the immense privilege of seeing for myself the extraordinary work of our children's hospices. 'Lifting spirits through laughter, fun and play, as well as listening, holding, caring and sharing, they support children and families through life, death and beyond. 'This Children's Hospice Week, I hope you will join me in celebrating the life-changing work they do and thanking them for the vital care they provide to children and families experiencing the most challenging times.' The national Children's Hospice Week is led by children's palliative care charity Together for Short Lives and the event is dedicated to raising awareness of children's hospice services. Nick Carroll, chief executive officer of Together for Short Lives, said about Kate: ''Her ongoing support for Children's Hospice Week over many years has helped to raise much-needed awareness of the life-changing work children's hospices do, every day of the year. 'Their extraordinary lifeline care for children with life-limiting and life-threatening illnesses enables families to make the most of their lives together, whether that's for years, months or only hours.'
Daily Mail
20-06-2025
- Health
- Daily Mail
Kate breaks her silence after pulling out of Royal Ascot - as she issues poignant statement about a cause close to her heart
The Princess of Wales has released a personal message about a cause close to her heart after pulling out of Royal Ascot earlier this week. Kate, 43, today issued a heartfelt note to mark Children's Hospice Week after deciding not to join her husband Prince William at the Berkshire races as expected on Wednesday. She was said to be 'disappointed' at not attending the famous social and sporting occasion with her husband Prince William and the King and Queen. Today, the Princess released a personal message celebrating the life-changing work children's hospices do and thanking them for the vital care they provide to children and families experiencing the most challenging times. The princess has been Royal Patron of East Anglia Children's Hospices (EACH) since 2012, and in January this year became the Royal Patron of Tŷ Hafan Children's Hospice in South Wales. The highly emotional note, which was signed by the princess, was shared on social media by Tŷ Hafan and children's hospice charity Together for Short Lives, the charity for children's palliative care. Kate said: 'No parent expects to hear that their child has a serious health condition that could shorten their life. 'Sadly, this is the reality faced by thousands of families across the country, leaving them heart-broken, fearful of the future and often desperately isolated. 'Being able to access the support of one of the UK's 54 children's hospices means they don't have to face that future alone.' The mother-of-three had visited the hospice in January - marking her first royal 'away day' since 2023 as part of her slow and steady return to royal duties following her treatment for cancer. Reflecting on her own work with children, she added: 'As Patron of East Anglia's Children's Hospices and Tŷ Hafan Children's Hospice in South Wales, I have the immense privilege of seeing for myself the extraordinary work of our children's hospices. 'Lifting spirits through laughter, fun and play, as well as listening, holding, caring and sharing, they support children and families through life, death and beyond. 'This Children's Hospice Week, I hope you will join me in celebrating the life-changing work they do and thanking them for the vital care they provide to children and families experiencing the most challenging times.' Earlier this week, the Princess of Wales pulled out of attending Royal Ascot at the last minute as she continues to 'find the right balance' following her battle with cancer. Racegoers had been hoping to see the Princess after the Prince of Wales was named as one of the figures awarding race prizes during the second day of the meet. Ascot officials had confirmed at 12pm that the Princess was due to be in the second carriage in the royal procession with William, in a published carriage list. But less than half an hour later, Kensington Palace confirmed just before 12.30pm that Kate would not be attending - and a revised carriage list was published by Ascot. MailOnline understands the Princess was 'disappointed' not to be in attendance 'but she has to find the right balance as she fully returns to public facing engagements'. However, Kate's mother Carole Middleton did attend Ascot, wearing a dress from luxury women's designer ME+EM - alongside her daughter-in-law Alizee Thevenet, the wife of Kate's brother James Middleton. The 43-year-old Princess has been making a gradual return to public duties since it was announced in January that she was in remission from cancer. But in the past week she has attended three high-profile events - Trooping the Colour, the annual Order of the Garter service and a visit to a V&A storage facility in London. The Princess revealed in January she was in remission from cancer after making an emotional return to the specialist cancer institution, the Royal Marsden Hospital in Chelsea, London, where she was treated to comfort fellow patients. She had been receiving chemotherapy for an undisclosed form of cancer since late February last year with the King beginning his cancer care earlier that month following his diagnosis after treatment for an enlarged prostate. Announcing in September her treatment had ended, Kate described in an emotional video message how the previous nine months had been 'incredibly tough for us as a family' and 'doing what I can to stay cancer free is now my focus'. William later said in a separate interview how 2024 had been 'brutal'. In January, Kate 'proudly' announced her new patronage on a visit to south Wales. Arriving at children's hospice Tŷ Hafan. Catherine, 43, donned a checked dress from Zara with pussybow detailing and wore her hair in loose waves hanging down her shoulders, before being greeted by a member of staff. It wasn't long before the princess got stuck in to the visit, as she made a beeline for adorable children who visit the hospice who were using the soft play area. She took part in a musical session with children suffering from life-limiting conditions and even had her hand painted red to leave a permanent memory of her visit - just as King Charles had done years previously. Speaking to a young girl, she asked: 'What do you like doing when you're here?' before she replied to explain she enjoyed music. Kate then asked: 'Have you played any of the instruments?' and picked up a rattle before giving it a little shake. The little girl erupted in giggles and went on to demonstrate her percussion playing on a xylophone. She was overheard discussing 'challenging' times for families as she spoke with parents whose children have received care from the hospice. A source told the Mail at the time: 'When she became the Princess of Wales she and her husband vowed to celebrate and service the dynamic nation that Wales is today. 'I think the Princess choosing a visit to Wales for her second solo engagement of 2025 signals the importance that she places on Wales and the love that she has for the nation and its people.' Tŷ Hafan was the first children's hospice in Wales when it opened in 1999 and provides free care and support both within the hospice itself and in homes and communities. The charity's ambition is that no family should have to experience their child's short life alone, with staff 'walking alongside' every family who needs their support - through life, death and beyond. Holistic care, something that interests Catherine hugely, is a huge part of its ethos, focusing on the physical, emotional, social and spiritual needs of the children in its care. Irfon Rees, Chief Executive of Tŷ Hafan – which translates from Welsh to 'Haven House' in English – said: 'We are deeply honoured that Her Royal Highness The Princess of Wales has become Patron of Tŷ Hafan and it was an absolute pleasure to welcome Her Royal Highness to our hospice for the first time today. 'No parent ever imagines that their child's life will be short. Sadly this is the reality facing thousands of families in Wales. We can't stop this happening, but together we can make sure that no one lives their child's short life alone.' The wellbeing of children and their families has always been close to The Princess' heart, a palace aide said. The first patronage Her Royal Highness took on when she became a Member of The Royal Family was EACH (East Anglia's Children's Hospice) and she maintains a close relationship with the organisation to this day. The Princess is looking forward to building a similar relationship with Tŷ Hafan and the children and families it serves in Wales, they added. As Prince of Wales, King Charles was patron of Tŷ Hafan from 2001. The position was previously held by Diana, Princess of Wales while the charity was in its fundraising stage. Commenting on her patronage on the Kensington Palace X/Twitter account, the Princess said: 'A proud moment becoming Patron of Tŷ Hafan. 'Opening in 1999 as Wales' first children's hospice, Tŷ Hafan continues to provide specialist care to children with life-shortening conditions, offering vital support to them and their families, throughout life, at end of life, and beyond.'
