Riding the Roller Coaster of Life

The Kingsley Family began to recognize that there was something wasn’t right when Brett was 4 months old. He wasn’t sitting up or rolling over like either of his siblings were at that age. However, the pediatrician assured them that he was a little delayed and not to worry. At 6 months old, the pediatrician grew concerned and sent Brett to children’s for an MRI and blood work. The MRI check out, but the blood work brought about devastating news – Brett was diagnosed with Spinal Muscular Atrophy type 1.

Following the diagnosis, Brett’s dad asked the doctor if SMA type 1 is terminal and the response was hard to stomach – yes. It is the leading genetic killer of children under 2. The Kingsleys had a 25% chance with having a child with SMA, 1 in 6000 babies are born with SMA.

Unfortunately, Brett, an already fragile baby, had contracted Respiratory Syncytial Virus at 10 months, which landed him in the hospital battling for two months. While in the hospital he coded five times, yet he pulled through but not without repercussions. His parents then faced another hard decision – trach G tube or Hospice. They opted for the G Tube for their fighter.

“She witnessed the laughter and smiles brought to her child.”

A Kid Again:

Brett’s Mother, Allison, had known of Brett’s love of roller coaster for a number of years, but he had never been on a roller coaster due to his condition. While at the amusement park, she eyed a roller coaster and thought about it for a moment. Next thing she knew, she was unloading him out of his wheelchair and positioning his vent between her legs. During the short duration of the kiddy roller coaster, she remained terrified, but as she held on to Brett she witnessed the laughter and smiles brought to her child.

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