Sunday, August 17, 2014

Looking for something to do after breakfast and before Hawes Biker Days? Here ya go.

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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