is 18 years old and will be attending Belmont University
in Nashville, Tennessee in the Fall of '09 pursuing a degree
in Audio Engineering Technology. Daniel was actively involved
in sound and light production for his high school 's drama
productions, special assemblies, dances, etc.
the last several years, Daniel recorded services at his
church so that shut-in members could receive a recording
of the service on a compact disc.
until last year ('08), Daniel was actively involved as a
cadet in the Civil Air Patrol, a civilian auxiliary of the
United States Air Force which is often called upon to look
for downed aircraft.
Air Patrol, Daniel learned about how to be a team member on emergency
services response teams, participated in airplane, glider and
helicopter flights which oriented him and other cadets to the
role a pilot plays in search and rescue missions.
In June of
2008, Daniel was selected for participation in American Legion's
Boys' State in Minnesota.
participated in a one week bleeding disorder camp at Camp Courage-North
every other year since he was 7 years old. (Camp Courage-North
is a camp in northern Minnesota which provides a beautiful camp
setting for people with various types of special physical needs).
Last year he was a counselor-in-training for the one week bleeding
diagnosed with Glanzmanns at the age 15 months. He has received
platelets four times, at 13 months, 17 months, at age 5, and most
recently in January of 2008 for a very deep arterial nosebleed.
In September of 2008 he underwent oral surgery for removal of
his four wisdom teeth. Novo 7 was administered for this procedure
details in the Message Board).
goes to Belmont University in Nashville, he will be within walking
distance of a bleeding and clotting disorder center at Vanderbilt
name is Roger. My wife's name is Kay. We have two children.
Daniel is 12, and Sarah is 9. Only Daniel has Glanzmann's.
He was diagnosed by Dr. James White at the University of
Minnesota at the age of 15 months.
he had a bleeding problem at the age of 6 months. An immunization
took a very long time to stop bleeding. We also noticed
purple rings around his ankles from socks that were too
tight. Then he started bleeding in his ear after scratching
himself with a fingernail.
us another 9 months to get a definite diagnosis. Daniel's
Glanzmann's is classified as Type 1 or severe.
types of tests confirmed he is totally missing the glycoprotein
told us when we he confirmed Glanzmann's that even though it is
described as severe, it may manifest itself in ways different
from other Glanzmann's patients.
had the bruising which is typical of other Glanzmann's patients.
We were called by the police department in our community when
Daniel was about two years old. Someone suspecting child abuse
because of his bruises, saw Daniel at a garage sale and wrote
down the license plate of the car that Daniel had been in. We've
heard similar stories from parents of children with hemophilia,
so that part is not unique to Glanzmann's.
He has had
many nosebleeds. When he was younger, they were more severe, that
is, we would pinch his nose for up to 45 minutes in order to stop
the bleeding. While pinching his nose, often in the early morning
hours just after midnight, he would want to listen to a record
with songs from the 50s and 60s. We called it our nose pinching
record. For very severe nosebleeds, we sometimes tried something
called a rhino rocket. It is designed specifically for nosebleeds,
so that the nose does not need to be packed. It is basically gauze
on a string and is put in the nose for about 1 day. It is uncomfortable
for Daniel to use, but it worked. We did not have to do that very
often, but it was good to know there was something there that
we could do to help control severe nosebleeds. Daniel pinches
his own nose now, and tells us when he needs Amicar. Just recently,
we just switched to Amicar tablets. He greatly prefers them to
the syrup (blech!). We didn't use the pills sooner because the
pills are rather large.
hospitalized at 13 months for bleeding from the mouth/lip. He
fell while learning to walk, and at that time we knew next to
nothing about controlling bleeding. We had Amicar, but thought
it would stop the bleeding. We didn't know we had to get a clot
to form first before the Amicar would work. His hemoglobin level
was 5.7. He was hospitalized for 3 days and received platelets
and packed red blood cells. At 17 months, he had a mystery throat/nasal
bleed (or maybe new teeth?), which put him in the hospital. His
hemoglobin was at 5.2. That put him in the hospital for two days.
He received directed donor platelets from me and packed red blood
cells in that case.
nearly three years old as we anticipated the birth of our daughter
Sarah. We considered an umbilical cord stem cell transplant (essentially
the same as a bone marrow transplant). We even harvested the umbilical
cord blood at Sarah's birth. After Sarah was born, she was tested
immediately and found to not have Glanzmann's. Our hematologist
consulted with other hematologists around the country. Even though
the stem cell cord blood was a close match, they all agreed that
they could not recommend that Daniel get the transplant. They
felt the risks associated with the transplant outweighed the benefits.
When he was
5 years old (in 1996), he received platelets again for a fairly
serious injury he received after slipping while climbing unto
something at a relative's house. For those of you who use NovoSeven,
remember that NovoSeven was not introduced for use in the U.S.
until March of 1999.
He has not
needed platelets since then, but we sure thought that we might
need them again (or NovoSeven) while going through 4 days of continuous,
serious uncontrolled bleeding which was caused by the installation
of metal bands for braces in February of 2003. Our dentist used
novocaine with epinephrine around the tooth to finally stop the
bleeding. We think Daniel may have had antibiotic resistant strep
last year (2002) while we were on vacation. Ever since then he
seems to be susceptible to blood oozing in his throat when he
gets a sore throat.
OK now with letting his classmates know about his Glanzmann's.
This last year in Danielís class (2003), each student had to do
a report or a poster on a genetic disorder. Daniel chose Glanzmann's
and told his class about his disorder. He even gave them a quiz
at the end of his presentation. The bleeding because of the braces
got Daniel thinking about a time when some lifeguards at a State
Park were suspicious of Daniel's bruises, but never approached
us about them. On his own, with no prompting from us, he recently
wrote our U.S. Senator (Norm Coleman - we are from Minnesota),
and suggested that Congress pass a law requiring lifeguards, medical
staff, police, and daycare workers learn about the difference
between children with bleeding disorders and abused children.
Senator Coleman's office even called him back from Washington
about his letter.
When we are
dealing with a major bleeding episode, we need to remember that
Sarah needs our attention, too. The University of Minnesota Hemophilia
Center hosts periodic bleeding disorder support group meetings.
At the suggestion of my wife, Kay, one of the meetings dealt with
how siblings feel about growing up in a house where a brother
or sister has a bleeding disorder. The brothers and sisters of
the children with bleeding disorders got to have the grownups
ask them questions about how they felt when their sibling was
"getting all the attention".
We have learned
that it is important to never stop asking questions about medical
issues, that the parents often need to advocate for their children,
and that parents often need to educate the professional people
in the child's life (teachers, dentists, even doctors) about how
this disorder is affecting the life of the child.