Toby’s Story
When their perfect little blue-eyed boy was born in November 2013, first-time parents
Tim and Kim O’Grady had no idea that their lives were about to be turned upside
down. Everything was fine until Toby had a seizure at the age of eight weeks.
“At first we thought it was a one off. It was scary and it took us by surprise but he
recovered pretty quickly,” says Tim. After that first trip to A & E, the couple returned
home, expecting life to return to normal.
Little did they know that seizure was to be the first of many and now the family’s life
is dominated by round-the-clock care for their blond-haired two-year-old. In his short
life, Toby has been rushed to Milton Keynes Hospital dozens of times, and the family
have called the ambulance service over 100 times.
After extensive tests, Toby was referred to a neurologist in Oxford, where he was
diagnosed with Dravet Syndrome, a severe life-limiting condition that causes
seizures that last from seconds to hours, alongside other conditions such as learning
disability, autism and ataxia.
“Toby is two now, but his developmental age is around nine months,” says Tim,
watching Toby play at his home in Olney. The family have had to adjust every aspect
of their lives. There is oxygen in every room. Toby’s life is governed by monitors.
There is a sound and video monitor in his cot, along with a breathing and seizure
monitor that is so finely tuned that it can detect the slightest change of movement in
Toby’s mattress which suggests a seizure is imminent.
Toby was diagnosed at the age of seven months, making him one of the youngest
people in the UK known to have Dravet Syndrome. Tim is grateful to the skills of MK
consultant paediatrician Dr Abraham Oommen, one of the first doctors to suspect
that all was not right.
“Dr Oommen was amazing. Fortunately, we had videoed one of Toby’s seizures so
we were able to show him just how his body reacted during a seizure. He sent us to
a neurologist but getting the diagnosis was still an enormous shock. We were
completely numb, especially as we have no genetic tendency. For us, having a son
with Dravet’s is just one of those things.”
Both Tim and Kim are full of praise for the kindness and expertise of staff at the
hospital. An ‘average‘ month for Toby can involve perhaps one emergency
admission, four sessions of physiotherapy, one general paediatric appointment, a
speech and language session, sonographs on his liver plus regular blood tests and a
neurology appointment in Milton Keynes. Toby also makes regular visits to his
dietician in Bristol and Professor of Neurology in Great Ormond Street. He is tube
fed directly into his stomach and is on a high fat ketogenic diet, which has been
shown to help some patients control seizures.
“As you can see, we spend at awful lot of time at Milton Keynes hospital,” says Tim.
“Because we have such a good relationship with Toby’s regular doctors, it is very
easy for us to talk things through with them. If we’re not sure of anything, we know
we can have the conversation. And they know Toby so well, it really helps what can
be an incredibly stressful situation. Likewise, when Toby has an emergency
admission to Resus we know a lot of the team and they are excellent at both treating
Toby and keeping us informed of their actions.”
Despite his limitations, Toby is a happy little boy. He loves Bob the Builder and
books, especially The Gruffalo. He is unable to walk yet but gets around by holding
on to the furniture and using a walker to help strengthen his muscles.
“We never know when the next seizure will happen, how long it will be or if it will be
the last. Sometimes they can be up to 60 minutes long – and that’s when we end up
in resus. It does mean we can’t really plan our lives, though we know there are
certain things that trigger the seizures. We would love to take Toby swimming but
water is a trigger – we don’t know whether it’s water, or excitement, but it’s too great
a risk to Toby to find out.” In May 2015 Toby suffered a 70 minute seizure followed
by a 90 minute one a few hours later, the team in Milton Keynes induced him into a
coma and intubated him for transfer to Intensive Care in Southampton.
The couple get very little ‘down’ time, though they do have access to 16 nights a
year of respite care at Helen House Hospice in Oxford.
“Often that doesn’t go to plan. The staff there are wonderful but last time we got
there, Toby had a massive seizure and we didn’t want to leave him in case he had
more seizures. It’s impossible to relax when you are uncertain what’s happening to
your child,” says Tim.
For parents of a child with such a complex condition, Tim and Kim cope remarkably
well. They are the people who know him best and keep a very close eye on how his
vast range of medications affect him.
“The staff at Milton Keynes really are the most fantastic group of people. They are
incredibly thorough and do absolutely everything they can to make sure that Toby is
treated quickly and safely. We honestly can’t fault the work they do for Toby.”
Tim and Kim have set up Toby’s Trust to raise awareness of Dravet Syndrome and
to raise funds for vital equipment. To find out more about Toby and his condition,
visit www.tobystrust.org