Approved and Bring Solgensma To Canada for my son Marcell Spinal Muscular Atrophy & Other
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To: The Honorable Christine Elliott, Ontario Minister of Health
To: The Honorable Patti Hajdu, Federal Minister of Health
I am signing this petition on behalf of Marcel Muljarahardja
of Brantford, Ontario.
Marcel is a new-born baby boy who at, the age of one week,
was diagnosed with Spinal Muscular Atrophy (SMA).
This aflliction is due to a defective gene which causes the baby's
voluntary and involuntary muscles to stop working, including the
ability to breathe. SMA is fatal --if not treated within six months,
the infant will almost certainly die before the age of two.
There is one medicine available in Canada called Spinraza, but
this medicine treats only the symptoms of the affliction, and
cannot treat the disease itself. If this is Marcel's only treatment,
he will be sentenced to an early and painful death.
There is also one medicine available in the United States called
Zolgensma, a gene replacement therapy that actually does
attack the disease, and which is medically recognized as a
miracle cure. Unfortunately, this medicine has not been listed
by the Ontario Ministry of Health. Parents who wish to obtain
Zolgensma must pay for it out of their own pockets and purses --
at a cost of U.S. $2.2 million, or $3 million Canadian, plus the
further costs of hospitalization, if outside of Ontario.
Although Marcel's parents have started a Go-Fund-Me,
the reality is that it will not be able to raise this amount,
certainly not within the six-month window of treatment.
I therefore ask that you, Ms Elliott and Ms Hajdu, take on
Marcel's unfortunate situation as a case of compassion,
and immediately fund Marcel either to take the treatment
at Boston Childrens' Hospital, or to purchase one dose of
Zolgensma to be brought to Toronto to be administered
by Sick Kids' Hospital.
Although $3 million is a huge amount of money, surely you
will understand that it is microscopic compared to the 38
BILLION dollars that Ontario will spend this year alone in
the fight against COVID, and 300 BILLION additional dollars
that will be spent federally.
Yet, unlike COVID, and unlike the BILLIONS of dollars that
are spent annually on health care for people who are often
terminally ill with no hope of recovery, Zolgensma is a
ONE-TIME treatment that has been proven to cure this
affliction and which, if given to Marcel in time, will rescue
him from almost certain death and allow him to live a normal
and healthy life.
Ontario and Canada spend BILLIONS of dollars each year
to treat such medical misfortunes as cancer, diabetes, heart
attacks, Altzheimers, organ transplant, and numerous others,
many of which are caused by an unhealthy lifestyle. Yet Marcel
is a new-born baby boy who has done nothing wrong.
At this moment, Marcel is not showing any symptoms.
If he can receive his dose of Zolgensma immediately,
he will become the first baby in Canada EVER to be
cured of SMA even before he begins to suffer from it.
When COVID hit our shores, all of our provincial governments,
and our federal government, took instant action to protect us,
provide emergency funding, and help us to heal. These combined
expenditures at all levels will potentially total TRILLIONS of dollars.
Ms Elliott and Ms Hajdu, please find it in your hearts to spend
$3 million to save the life of one precious new-born infant. You
have that power in your hands. Think of how proud you will be
when you turn the darkness of certain death into the light of
glorious life. Thank you and God bless you.
Thank you from the very essence of my being.
(Father Of Marcellinus)
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