Dylan Nielsen is a 17 year old
Airdrie teen who has been living with a rare pineal
cyst tumour on his brain for the last 5 years.
Our health care system refuses
to recognize or even treat Dylan's rare condition
(less than 4% of people suffer.) The system let
Dylan spend his teenage years in a dark bedroom,
hiding from the light, suffering agonizing headaches,
seizures, and memory loss; constantly medicated
with anti seizure drugs just to function.
UPDATE: On December
23rd, Dylan will get his life saving surgery at
The Skull Base Institute in LA. However, the surgery
has not been paid for yet as the severity of Dylan's
condition did not allow for the time needed to raise
the money first.
Penny and Tyler will finally get
their son back, but their happiness will be overshadowed
with a medical bill for well over $150,000
US. They will need to raise this money
on their own, as our health care system refuses
to cover any of the expenses for Dylan's surgery.
As a mother you know when something
is wrong with your child and I refused to listen
to these doctors, so we took up the search on our
own to save our son. We have spent the past four
years searching for answers to help our son. It
has meant spending thousands of dollars of our own
money for different medical expenses, tests, and
scans in Canada and the United States. We live on
a single income, as there has to be someone with
our son at all times. As parents we would do anything
for our son.
Our perseverance has finally paid
off; we recently found out that a Pineal Cystic
tumour in Dylan?s brain needs to be removed. We
knew about the cystic tumour, but all of the neurologists
here refused to acknowledge that it could cause
any problems. One of the many difficulties this
has caused for Dylan includes extreme sensitivity
to any light, which causes him to become disorientated
and unable to even speak at times, as well as go
into full on grand mal seizures. This has meant
that he must take high doses of anti-seizure medications
4 times per day and stay in the dark as much as
possible. He spends most all day light hours in
his darkened room to avoid as much light as possible.
Though we keep all the blinds in the house closed
and as many lights as possible off, Dylan is still
unable to come out of his room for any length of
time. This cyst also causes him to have debilitating
headaches, extreme fatigue, vision problems, lack
of short-term memory, insomnia, and many other problems.
Dylan has also not been able to go to school for
the last four years nor is he able to do home schooling.
In our research we have discovered that left untreated
this May be fatal.
Prior to Dylan getting sick he
was a vibrant young boy who loved to ride his dirt
bike, Paint Ball, Snowboard, Swim, was on the school
rugby and track teams, Played in the school band,
was learning to play electric guitar, and game to
try anything. Dylan was always an excellent student
had many academic awards; he loves math and science
especially. He placed 1st all the way to the regional
science fair two years in a row. His teachers always
commented about ?what a pleasure he was to have
in their class.? And how quickly he seemed to make
friends, and was somewhat of a leader that the other
kids were drawn to. Dylan had chronic ear infections
for most of his life and his teachers always commented
that though he missed quite a bit of school as a
result of this he never had any problems catching
up when he returned. With all that he has been through
these last few years, though he is becoming frustrated
he still has a drive to succeed and has not given
up on himself.
We have watched our son go from
having an extremely active and rewarding life to
now spending his days suffering in the dark. It
is as though he is being held in solitary confinement
enduring punishment for a crime he did not commit.
Dylan still has a zest for life and would like nothing
more than to be able to return to school and learn
and get on with life. This has been very stressful
for our whole family to go through. We are sure
that some of you can imagine the pain we go through
as parents when we are unable to help our children.
We have exhausted all avenues available
here to help his life return too normal. It is our
wish that you will help us to give him a chance
at a normal life that he so greatly deserves, by
helping us raise the money to take him to the Skull
Base institute in Los Angeles California. USA. So
that he can have this cyst removed
To watch your child in so much
suffering and pain and to see each day of his life
slip away before you, never to get them back, this
has been one of the most agonizing and emotional
experiences a parent can go through. We have all
missed out on doing many of the normal family activities
that most people take for granted. Dylan so looks
forward to a normal life without all of the limitations
and sickness that this cyst has put on him.
The surgeon has already graciously
donated his surgery fees, we still need $150'000
to cover hospital fees, medical staff, anesthesia
and some travel expenses etc. While this amount
seems over whelming to one family or individual
it would only take 1500 people to donate $100 each
and we would have the money necessary to save our
sons life. Our attempts to have our story told in
mass media have fallen on deaf ears due to the fact
that our family doctor though he agrees that this
is an urgent situation has been told that he is
not allowed to speak out on our behalf. Please help
us raise the money to save our son. Thank you.
The pineal gland is found at the
back of the third ventricle of the brain (see diagram
below). Ventricles are fluid-filled spaces within
the brain. The functions of the pineal gland are
not fully understood, but one function is to produce
the hormone melatonin. Melatonin is involved in
regulating the body's 'internal clock', controlling
when we sleep and when we wake.
Tumours of the pineal
region
Cells within the brain normally
grow in an orderly and controlled way, but if for
some reason this order is disrupted, the cells continue
to divide and form a lump or tumour. A tumour may
be either benign or malignant. Although a benign
tumour can continue to grow, the cells do not spread
from the original site. In a malignant tumour, the
cells can invade and destroy surrounding tissue
and may spread to other parts of the brain. Although
this type of tumour is more common in adults, it
can occur in children. For unknown reasons, it is
more common in men than in women. Tumours affecting
the whole of the central nervous system (CNS), which
is made up of the brain and spinal cord, are fairly
rare. About 4500 people are diagnosed with brain
tumours each year in the UK. About one in every
100 (1%) of these tumours are in the pineal region.
.
Types of pineal tumour
Pineal-region tumours can be made
up of different types of cells. The most common
type of tumour in the pineal region is known as
a germinoma. Germinomas develop from germ cells
(cells in a very early stage of development). They
are fast-growing and may often spread to other parts
of the brain. Other types of pineal tumour include:
?astrocytomas ?teratomas ?meningiomas ?pineocytomas
?pineoblastomas
Causes of pineal tumours
As with most brain tumours, the
cause of these tumours is unknown. Research is being
carried out into possible causes.
Signs and symptoms
Symptoms of tumours in the
pineal region are usually due to increased pressure
within the skull (raised intracranial pressure).
This may be due to a blockage in the ventricles
(fluid-filled spaces) of the brain, which leads
to a build-up of cerebrospinal fluid (CSF). CSF
is the fluid that surrounds and protects the brain
and spinal cord. This increased pressure may also
be caused by swelling from the tumour itself. The
first sign of this type of tumour in children is
often hydrocephalus (water on the brain), which
can cause enlargement of the skull. Other symptoms
are likely to be headaches, vomiting (sickness)
and sight problems. Children are often tired and
irritable. The tumour may cause difficulty in looking
upwards, or focussing on close objects. Symptoms
may be caused by the tumour pressing on surrounding
areas of the brain, such as the cerebellum. This
will lead to problems with coordination and balance.
People often have difficulty walking and may appear
to stumble or walk awkwardly. Tumours in the pineal
region may extend to the pituitary gland and cause
delayed puberty in teenagers, or other hormonal
difficulties.
