Owen Campbell's fight for his life
SAVE SWEETPEA
Owen has started a new
journey.
This summer, a geneticist
from Dartmouth Hitchcock
Medical Center diagnosed
our son Owen with a rare
genetic disorder,
Mucopolysaccharidosis, or
MPS.
We now know that Owen has
Hunter's Syndrome, MPS II.
Hunter's Syndrome affects at
least one in 162,000 people,
almost all boys.
journey.
This summer, a geneticist
from Dartmouth Hitchcock
Medical Center diagnosed
our son Owen with a rare
genetic disorder,
Mucopolysaccharidosis, or
MPS.
We now know that Owen has
Hunter's Syndrome, MPS II.
Hunter's Syndrome affects at
least one in 162,000 people,
almost all boys.
Owen's mutation on his gene
is known. Other individuals
that share this same
mutation, have Mild Hunter
syndrome. What this means
to us is that the risk of a cord
blood transplant is too great
for Owen as it is very likely
that his brain will not be
affected and he will not suffer
from progressive neurological
degeneration. Owen will
benefit greatly by a new
treatment approved by the
FDA this summer.
This new treatment, Enzyme
Replacement Therapy is a
weekly infusion that Owen
will have at Dartmouth
Hitchcock Medical Center
and will provide his body with
a synthetic form of the
enzyme he is missing. He will
need this every week for life,
or until we find a cure.
Insurance has agreed to
cover the cost of the
treatment which is about
$300,000 a year.
This is not a cure. Owen's
body will still be affected by
Hunter syndrome in various
ways, including his bones
and skeleton (growth).
Our fundraising focus has
changed now that Owen will
be receiving ERT weekly.
We are starting to raise
money to find a cure for
Hunter Syndrome--to help
Owen and to help others.
is known. Other individuals
that share this same
mutation, have Mild Hunter
syndrome. What this means
to us is that the risk of a cord
blood transplant is too great
for Owen as it is very likely
that his brain will not be
affected and he will not suffer
from progressive neurological
degeneration. Owen will
benefit greatly by a new
treatment approved by the
FDA this summer.
This new treatment, Enzyme
Replacement Therapy is a
weekly infusion that Owen
will have at Dartmouth
Hitchcock Medical Center
and will provide his body with
a synthetic form of the
enzyme he is missing. He will
need this every week for life,
or until we find a cure.
Insurance has agreed to
cover the cost of the
treatment which is about
$300,000 a year.
This is not a cure. Owen's
body will still be affected by
Hunter syndrome in various
ways, including his bones
and skeleton (growth).
Our fundraising focus has
changed now that Owen will
be receiving ERT weekly.
We are starting to raise
money to find a cure for
Hunter Syndrome--to help
Owen and to help others.
There is no cure for Hunter's
syndrome.
syndrome.
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
Despite all of this, we
received some wonderful
news on November 17th. A
gene mutation study was
done on Owen's genes to see
where his mutation was. We
did not put any hope into
these results as most
children's studies come back
and they are the first
individual to have that specific
mutation. In fact, in over 80%
of the studies, this is the
case. And when the mutation
is known, most always it is
the severe form of the
disease. About 2/3 of all
individuals diagnosed with
Hunter's are severe.
But Owen always continues
to surprise us.
received some wonderful
news on November 17th. A
gene mutation study was
done on Owen's genes to see
where his mutation was. We
did not put any hope into
these results as most
children's studies come back
and they are the first
individual to have that specific
mutation. In fact, in over 80%
of the studies, this is the
case. And when the mutation
is known, most always it is
the severe form of the
disease. About 2/3 of all
individuals diagnosed with
Hunter's are severe.
But Owen always continues
to surprise us.