St Helens Mother Speaks Out as Care Shortage Leaves Terminally Ill Son Hospitalised
A mother whose terminally ill son is stuck in hospital because of a shortage of carers has spoken of her fears that he will die there alone. Toni Bluck, 30, from St Helens, Merseyside, desperately wants to look after her 11-year-old son, Caelan Chapman, at home. After his care package broke down three weeks ago, Caelan was admitted to hospital, and there is currently no plan for him to come home.
Caelan has a rare condition called Infantile Pompe disease, which is a genetic muscle weakness caused by the build-up of complex sugars. Many children with the condition do not survive past a few months old, but Caelan has defied medics and cheated death on many occasions. However, his mum fears that each day could be his last.
Understanding Infantile Pompe Disease and Its Symptoms
Toni was a young single mum when Caelan was diagnosed with Infantile Pompe disease in 2016 at just 16 months old. The rare genetic disorder is a progressive, muscle-wasting disease, and symptoms typically appear in the first few weeks or months of life. These include feeding problems, poor weight gain, muscle weakness, floppiness, and respiratory problems. Other symptoms also include enlarged organs and hypertrophic cardiomyopathy, which is a thickening of the heart muscle wall that can lead to heart failure.
If untreated, the disease is usually fatal within the first year to two years of a baby's life. Toni says Caelan is a lovely kid, describing him as really affectionate and funny. Speaking about the journey to Caelan's diagnosis, Toni says his muscle tone was so weak he could not roll over or sit up, and while she knew something was seriously wrong, the diagnosis was a huge shock and left her heartbroken.
The Long Road Home and Ongoing Care Package Failures
Caelan spent the next three and a half years in hospital before finally being allowed home in February 2020. Toni explains that Caelan received different treatments in hospital, but they could only slow the condition, and over time, he deteriorated. When he came home, there was a 24-hour care package in place, and he needed ventilation at all times.
According to the mum, however, carers only attended intermittently throughout Covid, and since then, a routine has never properly been maintained. Toni's partner, Nathan Chapman, works as a butcher and has raised Caelan as his own for the past eight years. Nathan cannot keep taking time off or he will lose his job, and the household relies entirely on his wages.
Impact on Family Life and Sibling Education
Toni, who is also mum to five-year-old Annabelle and one-year-old Thomas, explains that the family is literally housebound when the carers do not show up. Her younger daughter cannot go to school regularly, and Caelan's specialist school attendance is less than 40 per cent, which Toni calls deeply unfair. Like any child, she stresses that he has a right to an education.
While Toni has been struggling with her son's care situation for years, her own health has suffered immensely, and she can go 60 hours without sleep. She does a nightshift looking after Caelan and is then up with the other children during the day. The problem became critical three weeks ago when a foot injury left her reliant on crutches and medication.
Hospital Admission and the Search for a Sustainable Solution
The mum is currently unable to care for Caelan alone, and with the absence of regular care, he was admitted to the Royal Manchester Children's Hospital as an alternative. She thought it would just be for a few days, but he has been in there for three weeks, and there does not seem to be a plan to bring him home again. The hospital is a long journey away, and as she does not drive, she sees Caelan twice a week, which she says is not enough.
Toni misses him and worries constantly that his condition might worsen while she is not there. She has monthly meetings with the Integrated Care Board, the local authority, and social services, but nothing changes. She has also contacted her MP and visited Citizens' Advice, but nobody has been able to help, leaving her feeling desperate.
Response from Health and Local Authorities
A spokesperson for NHS Cheshire and Merseyside stated that they are unable to comment on the care details of individual patients due to patient confidentiality. However, they confirmed that they are working closely with partners to ensure appropriate care and support arrangements are in place, with the priority remaining the secure package of care needed to support a safe discharge from hospital as quickly as possible.
Meanwhile, a St Helens Borough Council spokesperson confirmed that the council and its partners are actively involved in working with the family and reviewing arrangements to ensure the child's assessed needs continue to be met safely. They noted that decisions regarding hospital admission, treatment, and discharge are led by healthcare professionals based on clinical assessment and patient safety considerations, and they will continue working with health colleagues and the family to plan a safe discharge.
