Stem cell donations: Calls to give blood disorders more support

The mother of a seven-year-old with a life-threatening blood disorder says despite treatments being the same as cancer, they don’t receive the same charity support.

After spending the first five years of his life in and out of hospital, Jasper Hodgson-Smith was diagnosed with a rare primary immunodeficiency Activated PI3K Delta Syndrome (APDS) in August 2023.

Jasper is the only known child in Wales to have APDS.

Sophie Hodgson-Smith, 32, said some charities have refused the family help despite being uprooted to Newcastle from their home in Swansea for six months while Jasper undergoes a bone marrow transplant.

Now, she is calling for blood disorders to be better supported and wants to de-bunk the myths around stem cell donation.

The family have had to relocate to Royal Victoria Infirmary for specialist care while Jasper undergoes a bone marrow transplant donated from his father, Matt Hodgson-Smith.

Meanwhile, they still have to pay their mortgage for their home in Mumbles, Swansea, which Sophie’s mum has moved into.

Sophie said the situation had been very stressful, as she was let go from her job while her husband was granted sabbatical leave to support Jasper through his journey.

She said the lack of awareness around blood disorders had left them isolated to certain financial support received from charities for those with more well known illnesses, such as cancer.

“Blood cancer and blood disorders often require the same treatment journey, including finding a donor, enduring transfusions, and undergoing a transplant,” said Sophie.

Sophie said while cancer is no doubt absolutely awful to have to go through, “no child should be treated as less worthy because of the label attached to their illness”.

Jasper has received several transfusions from stem cell donors over the years, as well as rounds of chemotherapy to prepare his body for the transplant.

Yet Sophie said the most help the family received was from The Masonic Hall charity, who assisted them with accommodation, while the charity Morgan’s Army gifted a food voucher as a one-off, but said they usually help cancer patients.

This extends into the hospital ward too, Sophie said, as children being treated with blood disorders are not enrolled on The Beads of Courage program, which helps children document their journey through treatment.

“Blood disorders are just as life-threatening and require just as much resilience, yet these children and their families are often being left behind,” she said.

Co-founder of Beads of Courage, John Drummond, said it’s the charity’s “ultimate goal” that all children in the UK who are chronically ill or have life limiting conditions should have free access to the programme.

He said he would expect a child being treated on an oncology ward to be enrolled into the programme, but sometimes new staff are “not trained on correct policies and procedures”, partly down to lack of funding.

“Currently we only have a sponsor for the oncology part of our programme and in order for us to support every child in the UK, we would need to acquire much more funding,” he said.

Welsh children’s cancer charity Latch recently withdrew funding for some blood disorder patients because their conditions were not medically defined as cancer, so they “fell outside the charity’s current scope”, a spokesperson said.

In a statement, the charity said: “Latch is a charity that supports children with cancer, including leukaemia (blood cancers), not benign blood disorders.”

It said it was reviewing its remit due to the complexity of some disorders but it has been necessary to pause support while it updates its governing documents.

Jasper’s diagnosis came after “years of hospital visits, misdiagnoses, and watching him suffer without answers”, Sophie said.

It was frequently misdiagnosed as chest infections, meaning he was prescribed two to three rounds of antibiotics every month and often admitted to hospital between six to eight times a year.

She said Jasper’s weak immune system was normalised, but she knew in her gut something was wrong.

The calls follow a family plea for stem cell donations to save three month of Dolcie-Mae, who has also been diagnosed with a rare blood disorder.

Sophie said people often assume they cannot join the register because the Anthony Nolan register is only open to 16 to 30 year-olds, but there are other registers available.

DKMS accepts donors up to 40 years old, while the Welsh Bone Marrow Donor Registry accept donors up to the age of 55.

She said that other options could save lives, yet so many people simply don’t know they exist.

Also known as a stem cell transplant, a bone marrow transplant is a medical procedure that replaces damaged blood cells with healthy ones.

Conditions that stem cell transplants can be used to treat include:

• Severe aplastic anaemia (bone marrow failure)
• Leukaemia – a type of cancer affecting white blood cells
• Lymphoma – another type of cancer affecting white blood cells.
• Multiple myeloma – cancer affecting cells called plasma cells
• Certain blood, immune system and metabolic disorders – including sickle cell anaemia, thalassaemia, severe combined immunodeficiency (SCID) and Hurler syndrome

Source: NHS website

There is also a misconception that the procedure to donate stem cells is taken from the hip bone, Sophie said.

But in fact 90% of procedures can be taken via a peripheral blood stem cell, which is much like giving blood, while 10% of bone marrow donations are taken directly from the hip bone, according to the NHS website.

Jasper has received his transplant but there is “still a very long way to go,” said Sophie, at three weeks into their six month long treatment.