Smith-Magenis Syndrome: Plight of boy who cries to music

The family of a
boy who has a
condition that
makes him cry
when he hears
music hope
raising
awareness
about him will
make people
more
understanding.
Louis Mushrow,
nine, has the
rare, genetic Smith-Magenis Syndrome
(SMS), which also makes it hard for him
to eat and sleep, and can affect
behaviour.
His parents, from Hawarden, Flintshire,
say people can make nasty comments as
they are not aware of the condition.
They hope by educating people about
SMS, Louis's future will be easier.
SMS, a developmental disorder that
affects one in 25,000 people, can make
life challenging for all the family.
Louis has disturbed sleep, hearing and
speech difficulties, and problems eating -
he used to be afraid of food because he
was unable to eat or drink without
choking until he was three.
Certain music, such as classical or love
songs, also makes Louis cry because it
releases emotions in his brain.
His mother Lisa said that she realised the
effect some songs could have on him
when he started sobbing to the Welsh
national anthem at a school Eisteddfod.
"People sometimes think he's crying
because he's upset," she said.
"We found out it's because certain music
releases all these emotions in his brain.
"He does the same when he becomes
really excited about something. We can't
really explain it - it's just the way his
brain is wired up."
Louis was born six weeks prematurely
and stayed in hospital for nine weeks.
He would not feed on his own but
doctors initially thought this was a result
of him being born prematurely.
"As a mum I just knew something wasn't
right," said Mrs Mushrow, who has two
other children with husband Martin -
Adam, 14 and Hannah, three.
"So we decided to have genetic testing
done. The results came back saying he
had Smith-Magenis Syndrome.
"We walked away with a sickening
feeling. It was the worst day of our
lives."
The family said that after the diagnosis
they were given little information about
the syndrome beyond one leaflet and
had to do their own research.
They made contact with other families
and now hope to highlight the condition
on Friday's Jeans for Genes Day - when
people can wear jeans to school or work
for the day while donating money to the
charity.
Mrs Mushrow said even medical
professionals had often not heard of the
syndrome, which was only discovered in
the 1980s.
While research is being conducted in the
United States, she said the UK did not yet
have a specialist in SMS and she often
needed to tell doctors about it when she
took Louis to see them.
"It's like a learning curve for all of us
and that's why I want to raise awareness
about it," she said.
"Equally there could be other parents
who might not be aware their child has
the syndrome.
"We were lucky that Louis had the
genetic tests at nine weeks old and that's
meant we've been able to get specialist
help for him."
'Nasty comments'
In particular, the family hope that by
educating people about Louis's
condition, it will help others to
understand that he is not a naughty
child.
"Louis can have quite bad behaviour
because of the condition and we do have
nasty comments from people," she said.
"Once when we were in a retail park he
was on the floor screaming when a
gentleman said to us 'sort your son out'.
"I can only go to the supermarket for a
few things at a time as he can't cope
with too much at once.
"We have had him picking up a tin and
throwing it.
"You get dirty looks and people tell you
to control your child. But Louis can't
help it.
"People don't understand because he
doesn't look like he has special needs.
People look at us and think we're bad
parents."
She said awareness was key to helping
improve life for her son.
For instance, the family invited his
teachers to attend an SMS Foundation
conference.
"Louis's teachers changed his education
programme as a result so he could sleep
for an hour in the middle of the day,
which has helped his learning," she
added.
Despite his problems, his mother says
that Louis has an infectious personality.
"He makes everyone laugh at school,"
she said.
"And he'll often say things like 'I love
you mummy' or 'I want cuddles'.
"When you've had a hard day, hearing
something like that is really nice."
She added: "I hope that he'll go on to
college one day. I just want him to be
safe and happy."