The Times - UK (2022-01-01)

the times | Saturday January 1 2022 19

News

A baby born with a debilitating muscle-
wasting condition has taken his first
assisted steps after being given the most
expensive drug available on the NHS.
One-year-old Edward Willis has a
“new lease of life” thanks to Zolgensma,
a recently developed gene therapy that
costs £1.79 million, his mother said.
Edward was born with spinal muscu-
lar atrophy (SMA), a condition caused
by the lack of a protein vital for muscle
development. Megan Willis, from Col-
chester, Essex, watched with tears in
her eyes as her son was able to move
with gaiters to support his legs.
She said that Edward, who was given
the drug in August, had achieved
milestones that would previously have
been unthinkable, such as rolling over
and sitting without help.
“We are so proud of Edward,”
she told the BBC. “He’s doing
incredibly well. He is far sur-
passing our expectations. We
are so incredibly lucky. All I
ever wanted was for him to be
able to sit and I knew then he
would have an amazing life...

Baby takes his first

steps after having

£1.8m drug on NHS

Jack Malvern It brought a tear to my eye when I first
saw it. It was an incredible moment.”
NHS England announced in March
that it had negotiated a discount for the
drug, which has been described as the
most expensive in the world. The NHS
said that babies born with severe type 1
SMA had a life expectancy of two years
but that Zolgensma, manufactured by
Novartis Gene Therapies, had helped
babies breathe without a ventilator, sit
up on their own and crawl and walk
after a single infusion treatment.
In England, about 65 babies are born
with the condition each year.
The Willis family moved to London
to allow Edward to have physiotherapy
up to five times a week.
His mother said that he had lost his
lethargy and become a normal, playful
baby. “This drug has given Edward his
life back. He has got a new lease of life.
It’s a marathon, not a sprint. It’s
going to take a long time for
Edward to catch up but he is slow-
ly getting there.” She hopes that
her son could be part of a new
generation of babies with
SMA to reach adult-
hood. “I thought his
time with us was num-
bered but now I don’t
think that at all,”
she added.

Megan Willis with
Edward: “It was an
incredible moment”

A

rare racing

Porsche

previously

owned by the

Hollywood

actor Robert Redford is

going under the hammer

next month (Nadeem

Badsham writes).

Redford, 85, purchased

the green sports car three

years before starring in

the 1969 film Butch

Cassidy and the Sundance

Kid alongside Paul

Newman.

The actor kept the 1964

Porsche 904 GTS for

almost a decade in

California.

The Carrera GTS,

designed by Ferdinand

“Butzi” Porsche, has a

beam chassis and

with a plastic

body reinforced

with glass fibres

grafted onto it.

Its first owner

was the American

racing driver Steve

Earle, who created the

Monterey Historic Races

at Laguna Seca in

California.

The car is being

auctioned at Bonhams in

Paris on February 3 and

is expected to sell for up

to £1.3 million. Bonhams

previously presented the

vehicle at its auction in

Phoenix, Arizona, in

January 2019 but it went

unsold.

Race is on

for Redford’s

1960s green

machine

Robert Redford

bought the Porsche

904 GTS in 1966,

shortly after he

starred in Inside

Daisy Clover, below

BONHAMS/MEGA

the

Races

to £1 3 million Bonhams