RARE CONDITION

Boy with rare blood cancer appeals for help to get treatment

What began with an ordinary pain in the throat turned out to be a very rare form of blood cancer

In Summary

• Jayson Njeu has mixed phenotype acute leukaemia, a very rare form of cancer of the blood that occurs in only two percent of the people.

• He needs at least Sh10M to undergo treatment in India.

Jayson Njeu who was diagnosed with mixed phenotype acute leukaemia at the Aga Khan University Hospital where he has been receiving treatment.
Jayson Njeu who was diagnosed with mixed phenotype acute leukaemia at the Aga Khan University Hospital where he has been receiving treatment.
Image: AKELLO ODENYO

Nothing about Jayson Njue's health pointed to a rare disease that would turn his life around so suddenly.

Jayson, who lives with his family in Athi River, Machakos county, is battling a rare blood cancer, which has changed his routine since diagnosis mid last month.

His diet no longer has any junk or sugars. He cannot go out to play with other children and is constantly on medication to ease his regular body aches. His 11-year-old sister and four-year-old brother are his closest playmates.

For the seven-year-old reserved yet jovial child, these changes are necessary to enable 'a factory in his body produce the right material, in his case, toy guns.' 

"I love toy guns, but the doctor told me that a factory in my body called the bone marrow is producing bad spiders which I detest," the boy said.

He continued, "I will therefore be treated in India where my brother or sister will donate to my body machines from their factory so that they can make the toy guns".

Jayson was diagnosed with mixed phenotype acute leukaemia, a very rare form of cancer of the blood that occurs in only two per cent of the people with blood cancer.

On March 13, when Jayson complained to his father about a painful throat when swallowing food, he assumed it was a minor infection that would go away after treatment.

"I took him to Gertrude's Children Hospital the next day, but the test disclosed he did not have a throat infection," his father, Joseph Mugo, said.

" I was so shocked and devastated when two millilitres of blood was found to have over 200 white blood cells instead of the usual 10 cells, meaning he had leukaemia. But that was nothing compared to how I left when I learnt that he has MPAL," the father added.

Further tests revealed that the Grade 1 pupil at Mutungoni Academy has two types of leukemia — acute myeloblastic leukaemia and acute lymphoblastic leukaemia.

"He was admitted to the hospital for five days as more tests were done and a treatment plan established. While in the ward, he developed severe bone pains requiring pain control with morphine," his father said.

During that period, Mugo said his son had other symptoms, including vomiting, constant pain on different parts of his pale body and tiredness. The symptoms were sudden in onset with occasional fevers and feeling cold.

Jayson Njeu diagnosed with mixed phenotype acute leukaemia while at a hospital in Nairobi
AKELLO ODENYO Jayson Njeu diagnosed with mixed phenotype acute leukaemia while at a hospital in Nairobi

Treatment for MPAL usually begins by taking care of the early symptoms, often anaemia (too few red blood cells), bleeding or infection. 

Jayson is taking steroids prescribed to help manage his condition.

Typically, the boy will then have a month of intense chemotherapy, then radiotherapy, both designed to kill as many cancer cells as possible in the bone marrow.

A bone marrow transplant will then be done to provide healthy cells that makes normal white blood cells to replace the ones that were killed. Medicines to manage the pain and reduce side effects are then administered.

He is scheduled for chemotherapy and bone marrow transplant thereafter in India at an estimated total cost of Sh10 million. Jayson was expected to travel to India on Tuesday for the treatment, after his family managed to raise Sh1.5 million.

"We are appealing to friends and family to help us in raising the funds for his medical procedure,"Mugo said.

Donations towards Jayson's treatment can be channelled through M-Pesa Paybill Business Number: 8015943, Account:  JAYSON NJUE or directly to Joseph Njue Mugo 0714363925 or via bank transfer through Absa Bank Parkside.

Branch code:010 Bank code: 03 Paybill: 303030 Account No: 2044037788. Account name: Joseph Mugo

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