Seizures
Suck
Ride
and Silent Auction to benefit Natallie Baker
Poker
Run
&
Silent
Auction
Saturday
September 6th
Motorcycle
run starts at
9am
@ 4th St & Main Ave Northwest Parking Lot
Silent
Auction to start at
Shenanigans
Pub @ 11:30am
4001
W 41st St, Empire Mall
The
poker run will have an entrance fee that enters the rider in a raffle for a
Gun. More entries can be bought with level of swag desired.
The
silent auction includes: Black Hills 3 Day/2 Night Vacation Rental Package,
Local Artwork, Gun, Motorcycle Swag, and other items.
Two
years ago, Jess and Ryan Baker’s family of four was blessed with a third
daughter, little Natallie. After a regular pregnancy and delivery, the Baker’s
expected to settle into the typical newborn routine; however, by the time
Natallie was seven months old, she had spent four months in the hospital as
doctors searched for answers. Natallie was diagnosed with malignant migrating
partial seizure disorder with a SCN2A mutation, a rare disorder of which
Natallie is the first documented case. For part of her hospital stay, Natallie
was in an induced coma to rest her little body from the hundreds of seizures
she was experiencing daily.
A
year and a half later, little Natallie continues to fight hard. At one point,
the family was unsure they would have the chance to celebrate her first
birthday, and just recently, they were able to celebrate Natallie’s second
year. These milestones have taken much effort on all fronts; Jess and Ryan work
tirelessly with the doctors in Rochester, trying to find the delicate medicinal
balance between seizure control and alertness, while Natallie continues to
fight through each struggle she faces. As a result of these efforts, Natallie
receives at least one seizure medication every two hours, even throughout the
night. Three to four times a week, Natallie also works with physical,
occupational, and speech therapists. Every night, a nurse joins their family to
help with evening medications and to allow for some respite.
Because
Natallie is the first documented case of malignant migrating partial seizure
disorder with a SCN2A mutation, there have been no studies done on this
particular seizure disorder. The doctors are learning alongside the family.
Through every step of the journey, though, the Baker family continues to keep
their spirits up. They cherish every day that their three little girls get to
spend together, and their family of five tries to live every day to the
fullest.
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