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Mom’s Facebook group to petition Health Ministry to save baby
What do you know about the
muscle disease, spinal muscu-
For 35-year-old teacher and
mother of two, Valene Moham-
med, before 2016, the answer to
that question was nothing, zero,
zilch, “never heard of it.”.
Today, Mohammed knows much
more than she ever hoped.
She knows, for instance, that the
disease is genetic and affects the
She knows that if found in in-
fants, it can cause their death be-
fore they reach the age of two.
She knows that her one-year-
old daughter Demi Delaney Lara
Baptiste is barely breathing in the
Intensive Care Unit (ICU) of the
San Fernando General Hospital
because she was diagnosed with
Mohammed spends every af-
ternoon with her daughter. She
drives from the school where she
teaches in Penal to the hospital in
San Fernando every day.
Mohammed, who also has a
three-year-old son, had a normal
She found out she was pregnant
with her second child in 2015 and
had been diagnosed with anaemia,
but the doctors had treated it.
Though the pregnancy was un-
planned and unexpected, Moham-
med and her husband adjusted to
the idea of increasing their family
On June 17, 2016, baby Demi was
born. Her father called her Demi,
after actress Demi Moore and Lara
after the record-holding West In-
dies and T&T batsman.
Mohammed recalled that the
delivery was quick.
“When Demi was born, she was
checked out by the paediatrician
and nobody detected anything was
wrong,” Mohammed said.
At her scheduled six-week
check-up, everything seemed fine.
At the two-month mark, Demi’s
parents notice that she didn’t seem
to be developing as fast as they ex-
She couldn’t hold her head up,
never cried, and did not move
“We were concerned and at four
months, when she wasn’t devel-
oping normally and we asked the
clinic to check her, they said she
was probably just a late developer.
“At six months she wasn’t turn-
ing, wasn’t holding up her head,
her limbs were too lose. When I
went to her check-up they said
maybe she was just lazy. I didn’t
want to compare her to my son
thinking she was just a late de-
‘I did research for an entire day
and cried for an entire day’
Demi got ill in Christmas of 2016
and her parents took her to the clinic
near their Penal Rock Road home,
where the doctor realised something
was wrong, but didn’t know what.
They were given a referral to the
clinic in Siparia to see a paediatric
“At my appointment there, they
used the term hypotonia, which is
also called floppy baby syndrome
and is a state of low muscle tone,
often involving reduced muscle
Demi had demonstrated none of
the normal reflexes a typical baby
would have. Doctors explained to
Mohammed that hypotonia was not
a diagnosis, but was a symptom of
“They did a nerve damage test, an
ultrasound of her brain, a blood test
and we were supposed to do an MRI
but nobody wanted to do an MRI on
a baby younger than two years,” Mo-
Demi’s parents got another refer-
ral, this time to the San Fernando
Health Clinic where she got an un-
confirmed diagnosis that her daugh-
ter had spinal muscular atrophy.
Doctors asked her to do her own
research rather than explain the
disease and so Mohammed went to
“I googled it and it was the worst
thing a parent can imagine that came
up. When I saw what it was, which
is the number one genetic killer of
infants under two years, I did re-
search for an entire day and cried
for an entire day.”
Which brings us back to spinal
muscular atrophy, or SMA.
KidsHealth.org defines the dis-
ease as an inherited condition that
causes nerve cells in the lower part
of the brain and spinal cord to break
down and die.
When this happens, the brain
stops sending signals to the body’s
Babies with SMA can have dif-
ficulty crawling, walking or even
breathing. There are four types of
SMA. One of the major causes of
death is respiratory failure.
Demi has Type one, the most
of daughter dying’
“We signed her up to do physical
therapy. We tried to give her food
to boost protein in her body. I went
to a private doctor in Port-of-Spain
for a second opinion but he couldn’t
confirm because the test isn’t done
locally,” Mohammed said.
The parents contacted a private
company and sent a blood sample
to England for tests, where the di-
agnosis was confirmed.
Two months ago, Mohammed
took Demi to her appointment at
the clinic in San Fernando and asked
the doctor to check the infant’s lungs
after noticing a rattle sound.
“They said her lungs were a little
wet and told us to look out for signs
that she was getting worse, such as
not drinking her milk or behaving
The next day, Demi’s parents
noticed the signs and took her im-
mediately to a private doctor. The
doctor advised the parents to take
the infant to the San Fernando Gen-
Since May 13, Demi has been in
the ICU department as her parents
search for ways to keep their daugh-
“They said there was no cure and
that she would get progressive-
ly worse. She was incubated for a
month and they told us we need-
ed to make a choice because it was
getting more difficult for them to
put the tube in her mouth for her
Option one, was to take Demi
off of the machine, after which she
would probably survive for between
ten and 15 minutes.
The second option was to keep
incubating her, but that option was
Option three was to allow doctors
to perform a tracheotomy.
The parents chose option three.
They said because of her prognosis
they were not going to resuscitate
her if she need it.
She felt they were giving her few
options but a nightmarish thought
of her daughter dying.
Mom not prepared to give up
“As we are doing research we saw
there was a drug approved for tri-
als in the US in December of 2016,
and we were hoping that maybe we
could have gotten through to a clinic
trial but because she got so sick she
cannot travel any more.
“They recently approved the
drugs in Canada. We wrote to the
company to see if we could get the
drug available here. They wrote back
and said it was a very expensive tri-
al and the only way we could get to
use it was if the Government applied
for it. “We approached the hospital
and asked if they thought that could
happen but they said it was unlikely
as the drug is very expensive.”
Mohammed is not prepared to
Last week, she started a Face-
book group, in a desperate search
for parents with children affected
with the same condition. Her hope
is that if there are enough parents,
they can petition the Health Min-
istry to assist.
“I am just hoping beyond hope that
we can get access to the drug and that
my child can live. I think it is very un-
fair that my child has to die because
we live in a third world country.”
Baby Demi Delaney Lara Baptiste
and her one-year-old
Hoping for a miracle
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