One-month-old Birmingham baby undergoes chemo to save his eye after rare cancer found early

A young West Midlands mum’s baby started chemotherapy at just one month old after being diagnosed with a rare eye cancer.

Jahsiah Taylor-Johnson was born on July 19, and as part of the national Generation Study, a sample was taken from the umbilical cord and tested for more than 200 rare, treatable genetic conditions.

A few weeks later mum Kelcie Smith, 20, was told Jahsiah carries genes for a rare form of eye cancer called retinoblastoma.

Doctors found a tumour on his left eye on August 19 and it was shrunk by laser surgery immediately.

Little Jahsiah began chemotherapy on August 24 to further shrink the tumour; now after two rounds Kelcie and dad Lewis Taylor-Johnson, 25, have been told the tumour is under control and Jahsiah won't need more chemotherapy.

He will have the tumour lasered each month to keep it small enough not to cause problems with his eyesight.

Kelcie said that without the study, tumours might not have been noticed until Jahsiah started having problems with his sight or the tumours were visible, and he might have lost his eye due to treatment.

The nursery practitioner, from Birmingham, said: "I'm just so glad we did the study.

"It's amazing that they've caught and treated it so quickly.

"It's such a relief.

"They said the tumour was growing so fast he would definitely have had to lose his left eye if we hadn't been part of the genetic study and found it early.

"As soon as she said where she was from on the phone I was in shock.

"It was really hard for me to process.

"I really didn't expect to hear anything back, I just felt good that we were helping with research.

"You only hear back if there's a problem and we knew we hadn't passed anything down.

"As soon as she said the word 'cancer' it was my worst-case scenario: you just don't expect to hear that about your tiny baby.

"We were still getting our heads around the normal things like nappies and sleep."

Kelcie and HGV driver Lewis found they were expecting a baby in November 2025.

She first heard about the study when she went for a gestational diabetes test - because Jahsiah was growing fast - at about 20 weeks pregnant but forgot to sign up until his birth.

The Generation Study is a national study run by Genomics England and NHS England.

Jahsiah was born weighing nine pounds six ounces via emergency c-section at Birmingham Women's Hospital a few days before his due date.

Kelcie didn't expect to hear that her baby had a genetic disorder as there are none apparent in either her or Lewis's families.

Retinoblastoma is caused as the eye forms, and doctors said Jahsiah must have had a spontaneous mutation, where the genetic changes happen in his body and have not come from his parents.

Screening tests for the condition would be carried out in families where it is known to exist, but Jahsiah wouldn't normally have been screened because it doesn't run in either family.

Kelcie and Lewis were shown the pictures of Jahsiah's eyes, on August 19, and could see the tumour on the side of the retina.

Kelcie told Sell Us Your Story: "I knew as soon as I saw his left eye. It was so overwhelming.

"We are young, first-time parents, and that was already a lot to deal with.

"We could see in the nurses' faces how shocked they were to be doing all this to such a young baby, but it's saved his eyesight.

Because Jahsiah is so little he had chemotherapy over three days, eight hours on day one, four on day two, and one on day three, and then a three-week break before the next round.

The new parents had to change nappies every hour and plaster on special creams because the chemotherapy gave Jahsiah a badly upset tummy and sore skin.

"It was non-stop," Kelcie said.

"He was in so much pain.

"We're so relieved now the chemo is over."

Jahsiah has been left with a small scar on his left eye and medics are monitoring him with monthly laser treatment, which he is put under anaesthetic for.

She said: "It really shook us up at first, it felt really traumatic.

"We've watched it four times now and it doesn't get easier."

The couple put a sign on Jahsiah's pram asking people not to touch him because the chemotherapy weakened his immune system.

Kelcie said: "People ask about the sign and they can't believe it when we tell them why.

"He actually looks really well and healthy.

"This has been such a lot to deal with, I have focussed so much on him and it has been really hard to think about myself, including even self-care.

"I had no time for recovery from my c-section, it's been incredibly hard and exhausting.

"But I'm still so glad we did the study.

"I want all parents to have the opportunity of early testing, it's made such a huge difference to Jahsiah's life."

Retinoblastoma can affect one or both eyes, and is usually diagnosed in children under three.

Usually people notice a white glow in the centre of the eye, a squint, change in colour of the iris, uncontrolled eye movement, or vision problems.