with brother Callum (5), parents
Tracy and William McCausland and
grandparents Sam and Patricia
AN 18 year old Muscular Dystrophy sufferer
has described in what little Sam McCausland may face in the
future if no further progress is made in the battle against the
Jason Walker, who suffers from the Duchene
variety, has written a book entitled 'Missing my Body.
In his book Jason says he is frequently asked
what it's like to have Duchene Muscular Dystrophy.
"In an effort to answer that question
completely and honestly, I will tell you what it means to be
me," he continues.
"Every moment of the day is a challenge.
Every night, I go to sleep and hope that I will see the next
morning. My thoughts are constantly focused on keeping aware
that my circuit is hooked to my trachea and it is hooked up
properly to the respirator.
"My eyes are constantly monitoring my
machines to determine if there are any loose wires. I worry if
the circuit will come off because after all; this ventilator is
what's keeping me alive. Watching people around me, I hope and
pray that no one will accidentally bump into my portable
ventilator machine when I am out with family or friends.
"I would have to say on a daily basis, the
one and most important thing that is a worry is my ventilator
machine and my breathing. Without the machine I cannot breathe."
Sam's mother Tracy explained Muscular
Dystrophy degrades muscle fibres to the stage where they are
replaced by fibrous tissue.
"When a muscle reaches this state there is no
way of ever replacing it," she continued.
"We must hope that Sam and other boys of his age who have
been diagnosed will have a better future. This will only happen
if we find an effective treatment before it is too late - before
their muscles have wasted beyond repair."
Parents launch campaign to defeat fatal muscle
by NEIL GREENLEES
A HILLSBOROUGH couple whose toddler son has
been diagnosed with an incurable muscle wasting disease hope a
sponsored parachute jump due to take place at the start of the
summer will boost their newly launched campaign to fund
essential research into the condition.
Ironically, the first signs little Sam
McCausland was suffering from the terminal disorder Muscular
Dystrophy were picked up by doctors monitoring his health after
he successfully battled Meningitis at the neonatal unit of
Belfast's Royal Victoria Hospital during the first few weeks of
William and Tracy McCausland will be among
those taking part in the parachute jump on June 14 which has
been organised by Lisburn woman Gayle Currie. The couple have
launched their campaign called 'Please Fix Sam' while still
waiting to find out exactly what form of the condition their
little boy is suffering from.
However, they know without vital funding it
will be impossible to build on real progress which has been made
in the battle against the disease during the last few years.
They hope their campaign will raise £500,000
as well as increase public and political awareness of a
condition which currently claims the lives of many young men by
the end of their teens or early 20's.
William and Tracy are only too aware of what
the future holds for Sam if sufficient funding is not raised to
find a way of alleviating the condition.
They explained boys suffering from 'Duchene,
the most common form of Muscular Dystrophy, typically lose the
power in their legs first and end up in wheelchairs before their
The couple said the 'chronic lack of funding'
for vital research into Muscular Dystrophy must change. If not,
they added, boys like their little son affected by the disease
will 'run out of time.
The parachute jump will take place at Garvagh
and will involve tandem lumps from 13,000 feet while anyone
brave enough can go solo from 3000 feet. Those taking part must
be aged 16 to 80 and a stamped doctor's note is required for
anyone above the age of 40.
The event has a minimum sponsorship requirement
Further information can be obtained by e-mailing
A mother's despair
'It is our job to make every day as precious
and as happy as possible, and not to let this spoil the wonder
of seeing Sam grow, learn and develop into the clever, funny,
mischievous little boy he is becoming'
TRACY McCausland can remember 'dropping on to
the floor and howling like an animal' when her toddler son Sam
was confirmed to be suffering from Muscular Dystrophy.
The news doctors felt they had to carry out
tests on the little boy to 'rule a few things out' had already
brought a terrible sense of deja vu to her and Sam's father
Not only had they gone through the trauma of
watching him battle Meningitis while just days old - they had
also seen similar tests carried out on their older son Callum.
Ultimately these had ruled out Muscular
Dystrophy and Callum was finally diagnosed as suffering from a
severe form of Dyspraxia.
Callum now faces a variety of challenges - gross
and fine motor problems, immature play skills and an inability
to communicate through speech.
Tracy admitted by the time Sam, who was
monitored closely by doctors following his fight against
Meningitis, reached his 13 month check-up she had convinced
herself he was suffering from a milder form of Callum's
However, during the consultation both she and
her husband realised Sam's baby doctor "looked worried". "Sam
was still not putting weight on his feet, still not crawling,
and had hardly any strength in his arms," she continued.
"The doctor told us that he did not think that
Sam was suffering from Dyspraxia, as his other developmental
areas were leaps and bounds ahead. "He said 'we'll do some tests
to rule a few things out'. Three hours later I got a call to say
Sam's CK level was raised. "I felt sicker than the day they told
us he had Meningitis. Sicker than anything I could imagine. It
was like time stood still. I knew what this meant as I
remembered waiting for the results of Callum's CK test when they
told us Muscular Dystrophy was a possibility," she continued.
"I can't remember much about that afternoon
apart from feeling the most agonising pain and total despair. We
were given an appointment to see the Genetics Professor at
Belfast City Hospital, and she explained the grim possibilities
in relation to Sam's potential diagnosis. She was certain that
it was a Muscular Dystrophy, but not sure which one."
The phone call the couple dreaded came on a
Sam's muscle sample contained a little
dystrophin - the protein which keeps muscles healthy - but it
was patchy. The sample had to be sent to Newcastle.
Tracy began to spend 'all her waking hours'
on the internet talking online to other mums and finding out all
she could about Muscular Dystrophy.
A week after Sam's diagnosis was confirmed she
and William met with a neurologist.
"He received an hour long grilling from us on
every possible scenario - genetics, DNA, prognosis, research
etc," she continued.
"We were told it would take up to two months to
obtain the results of the further analysis of the muscle sample.
This will tell us more in terms of a diagnosis and prognosis."
Tracy said In the past weeks she has gone
through "every emotion known to man".
"I have found solace in friends, comfort in the
optimism of other proactive parents and a relentless appetite
for knowledge as I research every aspect of this cruel disease,"
"I have moments of utter despair, but when I do I look at my
boys and realise that it is our job to make every day as
precious and as happy as possible, and not to let this spoil the
wonder of seeing Sam grow, learn and develop into the clever,
funny, mischievous little boy he is becoming." Sam is currently
learning to walk, and took his first few steps on February 19
aged almost 18 months.
"Watching this is a joy, but it is also
tinged with longing and a little sorrow, as I want to know that
he will always be able to do this, but fear that one day it will
be taken away from him," said Tracy.
"Sam is such a cute little boy. His personality
is really starting to take shape. He has a glint in his eye and
a devil on his shoulder!! He loves to imitate everything he sees
and hears, and is a real fan of his big brother.
"His favourite toys are cars and trucks, and he
is mad about Thomas the Tank Engine and Bob the Builder. He's
also the littlest Giant (Belfast Giants Ice Hockey).
"I look at him and my heart melts. He has been through so
much already in his little life. He is a fighter - he has proved
that already, and with our help, love and support he will have
the best life."