Parents of miracle baby: 'Our Layla would not be having a second Christmas without Great Ormond Street's pioneering treatment'

Parents of baby saved by first-ever gene therapy operation back our appeal
Gift of life: 18-month-old Layla Richards at home with her mother Lisa Foley
Alex Lentati
Anna Davis @_annadavis21 December 2015

Miracle baby Layla Richards is preparing to spend Christmas at home after becoming the first person in the world to have her cancer reversed by a pioneering genetic therapy.

The 18-month-old had “incurable” aggressive leukaemia just a few months ago, and her family were told palliative care was her only option.

But doctors at Great Ormond Street Hospital used “designer immune cells” to fight the disease — a technique that had only previously been tested in the laboratory — and Layla is now cancer free.

Her parents spoke today in support of the Evening Standard’s Give to GOSH campaign, which will help fund the type of research that saved their daughter’s life.

Her mother Lisa Foley said: “She wouldn’t be having a second Christmas if it wasn’t for this treatment.”

Her father Ashleigh Richards added: “Layla has a purpose — to help other people. She was nearly at death’s door. You don’t normally hear a happy story with cancer. One day there will be a cure for cancer.

"Who knows, maybe in 40 years’ time Layla may have helped to make the first step towards that.”

Layla’s family, including sister Reya, eight, are determined her first Christmas at home will be better than last year, when she was in hospital having chemotherapy and suffering flu. She must spend most of her time indoors because her immune system is so low.

Little Layla
Alex Lentati

Ms Foley, 27, said: “We can go for a walk to the park but only when it is empty. She can’t be around lots of children and has never seen Father Christmas. We can’t take public transport or go swimming so her older sister misses out on a lot. CBeebies has become our world. It can be boring but it is nothing compared to losing your child.”

Layla with her mother and father Ashleigh Richards
Alex Lentati

Mr Richards, 30, added: “People are losing kids at Great Ormond Street. We can’t complain about being bored because some people would give anything to be bored. Being at home is better than being in hospital.”

Layla was three months old when she was diagnosed with leukaemia. Chemotherapy and a bone marrow transplant failed to cure her and the day before her first birthday her family were advised to seek palliative care.

But they refused and medical staff offered an experimental gene therapy. Mr Richards said: “When they mentioned palliative care I refused to talk to them. I didn’t want to think about giving up.” Unlike previous such trials, in which new genes had been added to correct a defect, this one actually edited genes already present.

Molecular scissors were used to precisely engineer the DNA inside a donor’s immune cells, so that these would seek out and kill only leukaemia cells. They were also made to be invisible to the strong drugs given to patients.

Doctors had one vial of the treatment to use on Layla, but an emergency ethics committee meeting had to be called first to discuss whether it was the right thing to do for her.

Mr Richards brought Layla into the meeting to try to convince doctors to go ahead: “I took Layla in on my shoulders and said, ‘Does this look like a child who is dying?’ She is a strong character, she’s like a tank. We were begging them, saying you can’t give up, I won’t give up on my child. We said, ‘There has to be a first. How will you know if you never try?’”

‘Please register as bone marrow donors’

Layla's parents urge everybody to sign up to become bone marrow donors. 

Because the toddler is mixed race it was particularly hard to find a match for her. Without bone marrow transplants Layla would not have an immune system strong enough to let her go home after the pioneering treatment.

Her father Ashleigh said the bone marrow for Layla’s two transplants came from the same man in Germany because a match could not be found in the UK.  He and Layla’s mother Lisa called for a change to organ donation rules, from an “opt in” system to an “opt out” one, where everybody who has not refused to donate is a donor.

Ashleigh, who is now on the bone marrow register himself, said: “We should all be on the register. There are so many black people here and they are not on the register. Why wait for cancer to knock on your door? Cancer knocked for my daughter and now I will donate. But you should want to help people naturally.”

Approval was obtained and Layla was given a one-millilitre infusion of genetically engineered cells intravenously. This took a couple of minutes followed by a five-minute flush.

About two weeks later she developed a rash — indicating the treatment was working. When she was cancer-free she needed a second bone marrow transplant to restore her immune system.

Her mother said: “When we first came to hospital I said I wanted the standard treatment everybody else has, because I didn’t want her to be a guinea pig.

“But life is funny sometimes. She needed to be this guinea pig — she has got a purpose to help other people.” Layla must stay away from anyone who has infections for about a year until her immune system improves.

A community nurse visits her home in Enfield to carry out blood tests every week, and she regularly returns to Great Ormond Street to check for minimal residual disease (MRD) — small numbers of cancer cells that remain in a patient even in remission and can trigger a relapse.

Where your money will go

  • Funding the Louis Dundas Centre for Children’s Palliative Care, for patients who have life-limiting or life-threatening conditions
  • Supporting the creation of a new specialist unit helping children with heart failure to stay well while they wait for a heart transplant
  • Funding research programmes, which aim to find new cures and treatments for children with rare diseases
  • Funding the patient and family support programme at the hospital, including a dedicated play team which designs activities for children to aid their treatment, recovery and understanding of their illness. It also funds a wide range of other support, all helping to make life as “normal” as possible for families while children are in hospital, often for weeks or months at a time

Layla has undergone so many procedures her parents have lost count of the times she has had a general anaesthetic. Ms Foley said: “We have to be happy so it rubs off on her. At the beginning we were crying all the time but we had to have a word with ourselves and stop.”

Her message to other parents going through similar situations is: “There is hope. Don’t give up — try new things.”

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