“He was late walking, but we did get him walking. Now
he can walk and climb by himself whilst he has the mind
of a baby so that is worrying, because he has no sense of
danger at all.
“Even now he’s still only having three to fifteen seizures a
day, and that’s a significant improvement, everyone can
see it.”
But getting to this stage was not an easy journey.
Lancashire-based Joanne and
husband Paul first asked about
CBD treatments in 2014 but
were told their son was not a
candidate for the Epidiolex
trials that were planned.
Three years later they decided to begin medicating Ben
with CBD oil they’d brought back from a clinic in Canada
M
eet boisterous Ben. In April, the 10-year-old
received a private prescription for medical
cannabis Bedrocan, which his family say
significantly improved his seizure rates, but in turn, has
cost his parents thousands of pounds.
Seeing her son go from suffering up to 100 seizures a day
to just three on a ‘good day’, mum Joanne is desperate for
an NHS prescription, and has jumped every hurdle and
hoop thrown her way.
and saw an impressive improvement.
Finally, when medicinal cannabis was legalised in 2018, the
desperate parents managed to obtain a prescription for
Epidiolex on compassionate grounds.
“It worked really well at first and reduced his seizures, but
it very quickly plateaued.” Over the new year period, Ben’s
condition deteriorated significantly, and he was admitted
to Alder Hey Hospital, where his parents refused to leave
his side.
“Watching it was horrific, it was just a horrible situation. He
just ended up looking like he was ready to die.
“We never leave Ben alone in the
“Ben is a twin, and I can see his twin going to play football,
hospital because he is autistic,
going to parties with his friends, but Ben doesn’t have
the staff can’t cope
that. It’s just horrible, it’s upsetting and it’s hard to come
with him and it’s very
to terms with” Joanne told The Cannavist.
distressing for him.”
Lovingly nicknamed ‘Boisterous Ben’, he also has
During this hospital
cerebral palsy, severe autism and the mental
spell a nurse
capacity of a 10-month-old baby, as his mum
observed Ben for 18
explains.
hours straight and
documented that
he had 200 seizures
in that time.
After trying courses
of anti-epilepsy drugs
with no avail, Alder Hey
moved Ben back onto an
Epidiolex treatment but he was
still suffering up to 300 seizures a day.
His parents had to teach him how to walk again and they
decided trying another cannabis treatment would be the
best next step.