Do
you know someone with the disease or even a parent of a child with the disease?
I
have a friend whose daughter is my daughter’s age, and she has had more
seizures from another type of epilepsy in her short life than I could ever
imagine. I also had a former boyfriend with a type of epilepsy, and always knew
where his medication was at all times should he ever need it, and to know when
to act to get him help should he need it.
Can
you imagine that this is what some families experience as their “normal”?
I
was most surprised by what I learned from the Epilepsy Foundation, and here
are some alarming and disturbing statistics:
- As many as 3 million people in U.S., and another 65 million worldwide, suffer from epilepsy
- As little as 40,000 are diagnosed with Dravet Syndrome; the disease is diagnosed during infancy and can be lifelong
- Most staggering is that, as many as 200,000 people in the U.S. will be diagnosed each year
- Epilepsy receives far less financial support from the government despite being more prevalent that Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy and Parkinson’s Disease combined
- In over 30 percent of patients, seizures cannot be controlled with treatment
- Because as many as 80% of Dravet Syndrome patients have the gene mutation SCN1A that leads to problems in how ions work in the brain and thus these patients are not as responsive to medication. In fact, there are some sodium blockers that can worsen seizures.
- Also, most of the diagnosed kids ages six and up are likely experience developmental disabilities.

The
Keto diet, as it is also referred to by the community of families impacted by
this disease, is no ordinary diet. It’s strict. It produces what’s called
ketones, which are formed when the body uses fat for its source of energy.
Thus, fats become the necessary fuel.
Apparently, the higher the level of ketone levels the more improved
control there is of seizures.
Jamie
and Jason (pictured left with their kids) often have their scale and calculator where ever they go, to prepare
and measure food that their daughter can eat, and are often rifling through
pages of food options and measurements to make sure their daughter is fed well,
with the right of amount of calories and fat, and so much more.
What’s
even more amazing is that they have become such a great team and work so well
together to help their daughter. Even more, their daughter has learned about life
with and without seizures and has gone along with the restricted diet to help
reduce, or in this case eliminate, her seizures.

To
think, managing a healthy baby, especially in the first year is challenging, I
can’t even imagine what it is like with a child with special needs, let alone a
rare condition.
Dravetfoundation.org,
a
non-profit organization started by parents of a child with the disease, is a
community committed to awareness of the disease, and to motivate much-needed
research. The group also offers grants for syndrome-specific research. Their
role is to help move forward the medical community to finding better treatments
and a cure while assisting with patients and their families coping with this
disease.
Jaime
and Jason also chronicle their own experience online at theketochronicles.blogspot.com. There
you can also hear about their experiences first hand, fall head over heels for
their adorable and precocious daughter, and their ongoing journey with Dravet
Syndrome. Jamie says, “The first few months getting adjusted to this diet is
important. It’s going to be hard. It’s going to be tough. Your kid is going to
want out. Stick with it, I implore you. It has worked for us and we still hit
snags in the road, with our daughter not wanting to do this anymore and wanting
a special treat. Being reminded of being seizure-free for over two years keeps
us going.”
Raising
children is a hard job. Doing so with a special needs child is even tougher.
Mommy’s Point of View has signed up to support Dravet Syndrome and will
continue to do so to help raise much-needed awareness and funds. If you would
like to donate, as every penny counts, visit here.
Being
in public relations, it is very hard to sit quietly and not do my part to help
spread the word. So, I wanted to take this time to acknowledge Jamie and Jason
for their incredible and tireless efforts for Dravet Syndrome, and for their
daughter, and wanted to acknowledge them as health heroes for this cause.
A
special shout out to Jamie and Jason for being awesome and dedicated parents,
and who are today’s Mommy’s Point of View Health Hero’s, for Dravet Syndrome.