My name is Diana Briggs. I’m blessed to be the mother of Ryan who is
now 13 years old. Ryan suffered an Anoxic event at birth that resulted
in multiple disabilities. Ryan has been diagnosed with Hypoxic Ischemic
Encepholopothy, C.P., M.R., and Epilepsy. Ryan has seizures everyday. On a
good day he has approximately 100 tonic clonic, simple partial, and
complex partial seizures. On a bad day we’ve
charted over 400.
We have tried over 10 conventional medications to
control his seizures. In the beginning some dropped his numbers but
soon he was back to where we started. Unfortunately they have all come
with awful side-effects. One medication harmed his kidney’s, another
became toxic and caused liver failure. We have implanted Ryan with a Vagus Nerve Stimulator with minimal results. He is also on the
Keto-Genic diet, this also has come with risk. Ryan now has to have yearly
EKG’s & Echo’s of his Heart to check for signs of distress due to
the diet. He also has bone density scans to check for signs of bone loss
due to the diet as well.
With everything we have tried we have never
gotten the control we have prayed for. We have unfortunately risked
Ryan’s health & well being by giving some of these legal
conventional medications. Many have asked how do you not just give up. I
WILL NOT GIVE UP!! I refuse to accept that my son has to live like
this. If you ever had to hold your child while his little body contorted
and shook uncontrollably while you prayed to God that he would just
keep your child breathing, you wouldn’t ask why I’m looking for
something, anything to stop these seizures! Please give my son the chance
at a better quality of life. Give us the opportunity to try Medicinal
Marijuana.
To Whom it May Concern,
My name is Alexis Briggs and I am seventeen years old. I’m sure that
this will be one of hundreds of letters you receive on the topic of
legalizing medicinal marijuana but regardless I felt the need to share
my story. I’m the oldest of three children and have a mentally disabled
brother. Due to complications at birth he has multiple disabilities but
one of the greatest battles he struggles with on a daily basis is his
high number of seizure activity. I could list all the names of
medication, the treatment, the unconventional measures my family has
taken, but that is not something one can easily relate to.
Instead, I’d
like to tell you my story. When I was three I was blessed with a baby
brother and the responsibility of becoming an older sibling. I didn’t
realize that my responsibilities were greater than most three year olds',
I was just happy to finally have a sibling. There have been many ups
along with the downs during his short thirteen years and I have been
part of them all, cheering him on. Most children start off counting in
kindergarten or preschool but I remember only counting my brother’s
seizures. My cousin and I would sit and count and see how high we could
go but often times we stopped in the hundreds. Eventually I grew to
understand what seizures were and why it caused my mother and father so
much pain to look at, but as any parent, they hid their pain well.
Seizures slowly became everyday life and perhaps easier to deal with as I
got older, until of course, he began having more. In fact, I remember
at one point, when they were really bad, medication wasn’t working and
the nurses had to list them as uncountable on their write up sheets
within the first hour of their shifts. I found my mother in her room,
sobbing, and I hugged her asking what was wrong. It’s impossible to get
the look of her face out of my mind when she said “I just want them to
stop. Just for an hour or so, just so he can sleep, I want them to
stop.” No teenager wants to see that; their hero defeated in that way,
but at that moment I felt like all of my heroes were, all because of
seizures. There was a hopelessness we all shared and at random intervals
we all feel again when that new med we prayed would work turned out to
be not as much of a saving grace as expected.
My family and I
collectively look for a new hope day in and day out because we cannot
give up. If my friends' siblings can run around and play and sing the
least I can do is make sure my brother can go a day without seizures. A
few months back I was sitting at home, searching the web for a new
medication. At seventeen years old. I know this life style is hard to
relate to and I don’t expect you to get it. I expect you to take into
consideration the fact that you will never get it. Take into
consideration that this is a life that only we know best. That’s okay,
we’re not asking you to get it. We’re just asking you to say yes. Our
Angels need this, now more than ever. Please do not deny us that right
to give our siblings, children, and loved ones the ability to be seizure
free. Please support SB 1182.
Update March, 2014
The new year started with Ryan's seizures on the increase. As most
parents know with children with epilepsy. We look for illness first, I'm
not saying we hope for illness in our child but that we know that could
be the answer to why our child's seizures doubled in numbers. The one
thing we don't want is to learn that the new medication is already not
working and it's now time to begin raising the dose. We started Vimpat
last May to help with Ryan's cluster seizures. In the first weeks of
January, 2014, he was now having at least one hour long cluster per day
that was uncountable and another 50 in an 8 hour period. So well over
100 tonic clonic, simple partial, myoclonic, and complex partial
seizures per day plus uncountable clusters. He wasn't sleeping at night
because he was waking up clustering. So on January 31, 2014 we agreed to
raise the Vimpat at bedtime to 200mg. Well the seizures stopped for
five days!! But that is because Ryan slept for FIVE days! There was no
therapy, no watching TV. No interaction at all because he was completely
SNOWED!! He then woke up. We of course did not raise the morning dose
as ordered by his doctor. And the seizures are back as bad as before we
raised the Vimpat. In fact on Feb. 25, 2014 he had 124 seizures in 8
hours.
