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Daily Record
3 days ago
- Health
- Daily Record
Disabled Scots youngster battling life-limiting condition denied school transport
Nine-year-old Jessica McMillan, from Galston, Ayrshire, has been refused a place on her school bus after five years at Willowbank school. A disabled youngster battling a life-limiting condition can no longer get to the school she loves after being denied vital transport by a council. Jessica McMillan was just two when she became one of the faces of a Daily Record campaign after her life was saved by stem cells taken from the umbilical cord of another baby. The now nine-year-old, from Galston, Ayrshire, bravely overcame a string of health battles after being diagnosed with MPS1, also known as Hurler syndrome, and has been thriving at Willowbank, a specialist primary school more than four miles away in Kilmarnock, for the last five years. But her parents were shattered to receive the news during the summer holidays that she was being refused a place on her school bus for the first time. They say the shock decision - branded 'heartless' by their local MSP - now means Jessica cannot travel to school without her mum Kathleen, 41, being forced to give up her full-time job, as dad Sammy, 49, recovers from a stroke. Sammy said: 'It was just so much of a shock. 'It's been the worst news we've had since Jessica was diagnosed when she was one. 'It's affected our whole summer and we didn't really have a proper holiday because we wanted to try and deal with this. 'She's due back on Wednesday but as it stands right now she won't be going as we just can't get her there. 'Jessica has very complex needs. She has mobility problems and developmental delays. On the last assessment they said she was around the 24 months mark. 'We've had many operations and hospital stays and it's a disease that gets worse as time goes on, so there will always be something else to deal with. 'The school has been great for Jessica. She has a spinal brace and only ever puts in on with her school uniform. She feels as though it's part of her school uniform. 'School has brought her on so much and she's learned to communicate better and become better at simple tasks. 'We've always been so appreciative of her going there. It's a brilliant school and a great routine for her due to her also having autism. 'With Kathleen's job it is completely outwith her working hours for transport. She would have to leave her job. 'I've had a stroke and while I can drive I'm not currently physically able to get her in and out of the car properly. 'She also needs an escort in the back of the car, so that would be a big struggle for us. 'The third option here is that Jessica just doesn't go to school.' Sammy added: 'The council has not answered why able bodied pupils who live in Galston and go to St Joseph's Academy on the same street as Willowbank get a free bus and Jessica doesn't.' The Record first shared Jessica's story back in 2017 in support of the Schiehallion Appeal, our campaign with Glasgow Children's Hospital Charity to bring more clinical trials to young cancer and blood disorder patients in Scotland. At that time, her condition affected just one baby in Scotland a year and the family had been given the devastating news that Jessica would die within a few years unless she got a successful bone marrow transplant. After a string of treatments, the blood from an umbilical cord donated anonymously four years earlier by a mum from outside the UK was flown to Scotland for a life-saving procedure. It saw her blood counts improve drastically and finally allowed her to go home with her parents and brother, also Sammy, now 14. Today Jessica needs a wheelchair for any distance over 100m and requires constant one to one care, with poor vision and limited hearing. The family say they were hit with the school transport blow after seeing reports that other parents had been refused and enquiring over Jessica's place with East Ayrshire Council in June. They were notified of Jessica's refusal on June 30, with the council stating that the rejection was on the basis that the family has been allocated a mobility vehicle. Jessica's family appealed the decision, saying they had no one physically able to transport Jessica as her mum has a full-time job at a nursery 14 miles away and her dad is in ill health. But the council confirmed last month it was upholding its decision, saying it was made in accordance with its policy, national guidance and relevant legislation, and that the responsibility for arranging travel and meeting any associated costs rests with Jessica's parents. A formal complaint by the family was not upheld. Their next step is to refer the case to the Ombudsman, but a decision could take weeks. Sammy said: 'The refusal was initially to do with the fact we've got a mobility car but we've learned of other parents with mobility cars who have had their appeals accepted and they live closer to the school than we do.' Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'. If you're curious, you can read our Privacy Notice. The MPS Society, which supports people with Jessica's condition, also wrote to the council on the family's behalf, saying the decision 'risks not only denying Jessica her legal right to education but also has devastating consequences for the wellbeing of her and her family'. Brian Whittle, Scottish Conservative MSP for South of Scotland, is taking up Jessica's plight. He said yesterday: 'This is a deeply upsetting case and my heart goes out to Jessica and her family. 'It is shameful that a severely disabled child is set to be denied access to the education she deserves because of brutal SNP cuts to council budgets. 'Decisions like this are not only heartless, they are harmful — and they're happening across Scotland. 'Vulnerable families are being forced into impossible choices, like giving up work or pulling their children out of school. 'Scots are paying more in tax than ever before yet getting less and less in return. The SNP must take responsibility for the pain their savage cuts are inflicting on the most vulnerable in our communities.' Alison Wilson, advocate of the MPS Society, added: 'We find it difficult to comprehend how, in Scotland in 2025, a child with such complex medical needs and a home life like Jessica's can be deemed ineligible for school transport. 'Denying Jessica the support she needs sends a troubling message to families of disabled children across Scotland.' East Ayrshire Council said it was not in a position to provide comment on the specifics of this case. The Council had received 504 applications as of last week, with 372 (74%) being approved A spokeswoman said: 'The Council can confirm that it is implementing an Alternative School Transport policy following a report to Cabinet in March of this year. 'The implementation of the new policy ensures that consistent, and reasonable, steps are being taken, on a case by case basis, to ensure the future sustainability of alternative school transport through actions that protect it for children for whom it is absolutely required, having regard to their particular circumstances. 'As part of the implementation process, previous transport arrangements require to be reviewed in order to establish whether they continue to be required. ' The Council can confirm that the application, and review, process for Alternative School Transport is almost complete. The Transport Review Panel established in accordance with the new policy has continued to meet during the school summer holidays in order to deal with all outstanding applications, and reviews, as quickly as possible and will meet to take final decisions before the schools return on Wednesday. 'It is important to note that there are no automatic exemptions or disqualifiers at any stage of the process and every application is given equal consideration on its individual merits through a consistent, and reasonable, application of the policy.' A Scottish Government spokesman said: 'Local authorities are responsible for making decisions on the provision of home to school transport services within statutory requirements. Councils should be making decisions on a case by case basis taking family circumstances and any reasonable adjustments into account. 'The Scottish Government has provided councils with a record £15.1 billion this year, a real terms increase of 5.5%. The total local government finance settlement increased by almost 50% between 2013-14 and 2025-26. Most local authorities have had to account for the planned hike in employer national insurance contributions and the UK Government is entirely responsible for this. 'In 2025-26, East Ayrshire Council will receive £329.5 million to support day to day services, which equates to an extra £18.3 million or an additional 5.9% compared to 2024-25. Taken together with the decision to increase Council Tax by 8% East Ayrshire Council will have an additional £23 million to support front line services in 2025-26.'
Time of India
18-05-2025
- Health
- Time of India
Bone marrow transplant changes two-year-old bedridden Adhiraj's life
MUMBAI: There's a reason two-year-old Adhiraj Gaikwad 's parents admitted him to a hospital in Mumbai for diarrhoea rather than a facility closer to home near Swargate in Pune. For one, Adhiraj was born with not one but two rare genetic disorders . Additionally, he underwent a bone marrow transplant to cure one of the conditions at this city hospital five months ago. On Friday, doctors at Kokilaben Ambani Hospital in Andheri said he is improving and should be discharged soon. 'As the transplant is quite recent, we have to get him here for regular checks and in case of any infection,' said his 34-year-old father, Mayur, who left his job as a marketing executive to gather funds for Adhiraj's treatment. The bone marrow transplant (BMT) cured him of one of the rare conditions called Mucopolysaccharidosis Type 1 (MPS 1), also known as Hurler syndrome or gargoylism, which affects only 10 in a million children. However, Adhiraj continues to suffer from Fanconi-Bickel Syndrome , a rare glycogen storage disease in which the body is unable to process glucose and galactose. It has no cure, and the patient can only eat a corn starch-based diet for life. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like Want Lower Bills Without Changing a Thing? elecTrick - Save upto 80% on Power Bill Learn More Undo Adhiraj, who was born 28 months ago, missed developmental milestones in the first six months. 'He wouldn't roll over like other children do and seemed grossly underweight,' said his father. After visiting multiple doctors, his parents were advised by doctors at Bharati Vidyapeeth Medical College in Pune to conduct genetic tests that revealed MPS1 and Fanconi-Bickel Syndrome. Due to these conditions, the child was non-verbal, had bodily and facial deformities, along with impairment of vision and mobility, said the doctors. MPS1 was previously referred to as "gargoylism" as the children had certain facial features such as a prominent forehead, widely spaced eyes, a prominent nose, and a short neck that led to the association with mythical gargoyles. Through online support groups, the Gaikwads first went to KEM Hospital in Parel, which is a designated Centre of Excellence (CoE) for rare diseases by the union health ministry. The hospital provided the special enzyme shots for a few months but recommended a bone marrow transplant for Adhiraj. MPS1, a lysosomal storage disorder in which an essential enzyme called hyaluronidase is not produced in the body, has a low incidence of one in 100,000 live births. 'India possibly has 200 children born with this disease,' said KDAH's paediatric oncologist Dr Santanu Sen, who treated Adhiraj. Most children with MPS1 never get diagnosed. Soon after birth, they develop coarse facial features, their development gets impaired, their intelligence gets compromised, and organs such as the liver and spleen become big and their joints get stiff. 'They often suffer from infections and could get cataracts and heart problems,' said Dr Sen, adding that the children rarely survive beyond eight years. The enzyme replacement treatment that KEM offered for free to Adhiraj costs between Rs 2.2 lakh to Rs 2.5 lakh per vial. A child needs two vials per week, with the monthly treatment costing around Rs 18 lakh. 'Hence, BMTs are a good option for children with MPS1. But, worldwide, less than 100 BMTs have been for this disease,' said Dr Sen. Before Adhiraj returned to Mumbai with his current diarrhoea problem, the Gaikwads had begun noticing changes in his health. 'It's like a switch in the brain has been turned on, and suddenly the withdrawn child who wasn't moving much has changed,' said the doctor. Mayur said his son was 7.5 kg at 22 months when he underwent the BMT. 'He has put on weight, and we have been noticing a lot of change in him. He is now able to sit with support. He smiles, laughs, and interacts a lot more than before,' he added. The family has already spent lakhs on his treatment so far. 'While the social workers at KDAH helped us generate funds for the transplant, we will need finances for his rehabilitation and management of the Fanconi-Bickel Syndrome,' he added.
