Two year old Isaac
McFadyen loves Rona Cashway. Everything about the building supply
store appeals to his little boy nature. From the aisles of gizmos
and gadgets to the expansive outside area where trucks can be seen
unloading their wares using forklifts and other such impressive
machinery, when Isaac is at Rona, he is in his element.
Since
Isaac’s parents, Andrew McFadyen and Ellen Buck-McFadyen, have been
bringing him with them to Rona on a regular basis since his infancy,
the Rona staff members know him by name and greet him the moment he
walks through the front doors with his winning smile. He calls each
of them by name in return, making his regular tour of the store.
Store Manager Morley Sinclair remembers getting to know the McFadyen
family when they were expecting Isaac.
“They’re good
customers of ours,” Mr. Sinclair said of the family. “Two years ago
they built a house with us and we got to know them quite
well.”
As Isaac saunters about his favorite store, he appears
to be quite a typical two year old boy. In conversation, he exhibits
a keen intellect and a sense of humor beyond his years. Despite his
charming demeanor however, all is not as it should be. At about one
and a half years of age, Isaac was diagnosed with an extremely rare
and serious metabolic disorder known as MPS VI, which is actually an
enzyme deficiency that results in a buildup of carbohydrate
compounds in the connective tissues of the body. The symptoms are
extensive, including but not exclusively joint stiffness, poor
mobility, spinal cord compression, and a drastically shortened
lifespan.
Isaac’s parents were devastated by the diagnosis,
but even in that dark moment they found a glimmer of hope. They
discovered that treatment for MPS VI exists in the form of
intravenously administered enzyme replacement therapy. The drug is
called Naglazyme, and is produced by the American pharmaceutical
company Biomarin. If he could receive treatment, many of Isaac’s
symptoms could be reversed, and further damage prevented.
Unfortunately, at around $200,000 per year to treat a child of
Isaac’s size, the drug is well beyond any average family’s means,
and the Canadian Government does not at this point have any policy
to cover it.
Drugs such as Nagla- zyme, which provide much
needed help for a very few people, are known as “orphan drugs”. The
term applies to any drug that has been abandoned or neglected during
its development because it has a limited potential for profit. While
many developed countries have addressed the issue of orphan drugs
through various methods and created policies to protect sufferers of
rare diseases, Canada has not.
Frustrated by the reality that
although treatment is close at hand, their son’s health continues to
deteriorate because the government will not help, Isaac’s parents
have established The Isaac Foundation. The goal of the foundation is
to raise money for Canadian research into MPS VI. They also have
established on-going communication with Provincial Cabinet Minister
John Gerretson, who has agreed to present their case to the Health
Minister and advocate on their behalf. While these are steps in the
right direction, the fact is that Isaac can not afford to wait
indefinitely.
With time passing by and Isaac not receiving
treatment, a sad last resort for the family to consider is
relocation. Mr. McFadyen is eligible for British Citizenship through
his Welsh mother. If the family moves to England and maintains
residency there, the British government will provide Isaac with the
help he needs.
Isaac’s story has touched the heart of the
community he lives in. His friends at Rona Cashway are attempting to
help however they can. A donation jar in the store collects money
for the Isaac Foundation, and on June 10, a barbeque will be held at
the store to raise further funds for the cause. Also on June 10, 5%
of the store’s profits will be donated to the foundation.
The
barbeque fundraiser was proposed by staff member Bob Laundry. Mr.
Laundry knew Isaac’s parents when they went to high school together,
and he felt for the family when he learned of their current
circumstances.
“It is a terrible situation,” Mr. Laundry
said. “I sure wouldn’t want to be in it and if I was I would hope
there would be someone to help.”
If you want to contribute to
the Isaac Foundation, stop by the Barbeque at Campbellford Rona
Cashway on June 10 between 10 a.m. and 2 p.m.
A website for
the Isaac Foundation offers more information about Isaac’s story,
MPS VI, and the on-going efforts of the McFadyen Family. Visit
http://www.theisaacfoundation.com/.
