by NEIL GREENLEES
parents of a Hillsborough toddler who set up the charity
Struggle Against Muscular Dystrophy (SAM) after he was diagnosed
with the invariably fatal condition fear their son will quickly
become 'a bright spirit trapped in his own body' after learning
he has a very rare form of the disease with so few sufferers
funding for research into it has all but dried up.
Tracy and William McCausland now face the
heartbreaking reality the lack of time and money available for
the battle against Congenital Merosin Deficient MD could mean
they will have to watch helplessly as Sam, who recently
celebrated his second birthday, deteriorates much more quickly
than they expected.
they intend to do everything in their power to prevent this
happening. They also believe their 'pleasefixsam campaign, which
raises funds for the charity, could soon become the only source
of funding for research into this type of Muscular Dystrophy.
"We are still working towards our target of
raising half a million pounds - that will enable us to help
start research into this form of MD. We will have to keep on
with the fundraising as time goes on," said Tracy.
"There may eventually be hope in such
developments as stem cell research which promises to help many
different medical conditions. Without hope we have nothing. We
cannot and will not give up."
Tracy and William's research into 'Congential
Merosin Deficient MD' has found just five children other than
Sam with this form of the disease and several of them have been
severely affected at a very young age.
little girl is no longer able to hold herself in a sitting
position let alone stand up at the tender age of four. She
already has Scoliosis (twisting of the spine) and has to have
breathing support," Tracy explained. Like the more common
Duchene MD, Congenital Merosin Deficient is caused by a problem
within the DNA which renders the body incapable of producing a
vital protein for muscle structure and maintenance - in this
Tracy and William have been dedicated
fundraisers for their charity since their son's diagnosis but
now face the heartbreaking prospect of little research into ways
of halting his deterioration from this particular form of the
disease being carried out
"I had word back just today from a scientist
in Pennsylvania who carried out a preliminary research project
in 2005 saying that they were unable to get any further
funding," said Tracy.
"Compare this to Duchene where there is a
real chance of a treatment in the near future - there are
currently over 40 research projects being carried out worldwide,
some of which are at human trial stage.
"The awful reality is that even if we are
able to fund further research into this form of the disease it
may come too late to help our wee man and that twists like a
knife in my guts -thinking that because of a lack of time and
money my beautiful child may become a bright spirit trapped in
the prison of his own body as his muscles steadily waste away...
No-one can imagine that pain."
present Sam is enjoying the Florida sunshine with his parents
and elder brother Callum, who is receiving therapy for Dyspraxia
in the sunshine state.
However, Tracy and William know these may well
be the 'best of times' his family will have with him.
"I have to admit that it was hard at times to
put aside the fear of what Sam's future holds and to just enjoy
the here and now. I couldn't help but wonder as I watched him
stumble around after his big brother if he will still be on his
feet next birthday" continued Tracy.
"I am so terrified of the future - I wish we
could just freeze time and enjoy the time Sam has now... I know
that these are the best of times we will have with him as the
future holds the terror of watching helplessly as Sam's muscles
deteriorate and his lungs and heart weaken.
"Wheelchairs, ventilators and feeding tubes
are looming who knows how far or how near around the corner. It
is a frightening future."
For Tracy and William the last few years have
been a real life version of every parent's nightmare.
Sam's diagnosis was the harrowing blow and
came just two years after they faced the prospect of losing him
when he became very ill with Meningitis shortly after being
Their elder son Callum also faces a
challenging future as he battles to overcome acute oral and
severe verbal dyspraxia.
"It's hard to stay calm and to be rational
and positive sometimes when you are so afraid, and when it seems
that fate just wants to kick you again and again and again. I am
just so sad for my two little boys," Tracy added.
The Hillsborough woman has spoken in depth about the hopes
and fears she and her husband share as well as Callum's battle
against Dyspraxia. Read the full story at
Soldiers raise �4000 for
charity while serving in war torn Afghanistan
Wilkins and the men of 2 Royal Irish
IMJIN Company with Gillian Garrett (S.A.M.
Chairperson), Sam Letters (S.A.M.
THE grandfather of Hillsborough toddler Sam
McCausland has been presented with a �4000 cheque by Territorial
Army soldiers who raised the funds while stationed in war torn
The money received by Mr. Sam Letters on
behalf of his daughter Tracy and son-in-law William during a
medals parade at Hillsborough Castle last Saturday will be used
by the charity 'Struggle Against Muscular Dystrophy' (SAM) to
fund its desperate quest to find a successful treatment for the
terrible illness which causes muscle wastage, quadriplegia, pain
and eventually death.
The TA soldiers, who are members of IMJIN
Company 2 Royal Irish, first read about the toddler's plight in
a news report contained in a 'morale package' sent to Sergeant
Gary Wilkins by his mum.
They immediately e-mailed the charity
offering to help raise both funds and awareness of the disease
which is the number one genetic killer in the
UK and Irish Republic. "In keeping with custom, 2 Royal Irish
donate to a charitable organisation annually and IMJIN company
were no exception, even out in Afghanistan," explained Sergeant
"Within hours of reading about the appeal our
operational resident barber, Corporal Alan Yeates, was busy
shaving heads to the required standard for $2 a go - all in aid
of SAM -while others put on their thinking caps in a bid to
raise as much cash as possible."
The soldiers decided on an epic stationary
cycle marathon covering the distance between Afghanistan and
Ballymena, their Northern Ireland base town, launched by Major
Mark Hudson, Officer Commanding Imjin Company.
However, as Sergeant Wilkins explained, the
stationary nature of the marathon did not make it any less
gruelling: "Company Sergeant
Major Errol Monaghan, Colour Sergeant Stephen
Barnes and I kicked off the sponsored ride on exercise bicycles
in the gym in temperatures averaging 44 degrees celsius," he
"Before the end of our tour, the distance of
5958 kilometres was whittled down by the officers, senior ranks
and men of Imjin Company." Gillian Garrett, Chairperson of
S.A.M.'s Charity Committee who received the cheque along with
Mr. Letters said they were "incredibly proud of the soldiers.
"When facing such adversity they had the
compassion to think of helping these children who are suffering
from this awful disease," she added.
Gillian also explained SAM is a 'zero cost'
charity: "Everyone who is involved in the campaign gives their
time, expertise, products and services for free. This means that
every penny goes directly into the hands of the researchers."
McCausland with brother
Callum, parents Tracy and
William McCausland and
grandparents Sam and