On an unusually warm December day in 2017, little Sierra Keim was born. The elation that her parents felt as they held their first newborn was short-lived. Their baby girl began to have seizures. The seizures became so debilitating that the infant turned blue and a decision was made to transport her from Olds to the Children's Hospital in Calgary.
"She was put in the NICU (Neonatal Intensive Care Unit) for four weeks. We actually were there over Christmas. Things kind of got under control and they let us come home," said Emily Keim, Sierra's mother. "She was okay for a little while and then her seizures ramped up to having over 100 a day for a few days, so we brought her back."
When Sierra was re-admitted, doctors diagnosed her with Malignant Migrating Partial Epilepsy of Infancy (MMPEI). MMPEI is classified as a severe form of epilepsy, with recurrent seizures beginning before the age of six months but commonly starting within a few weeks of birth.
"The seizures do not respond well to treatment. Although affected individuals may develop normally at first, progression stalls and skills decline when seizures begin; as a result, affected individuals have a profound developmental delay," according to the National Library of Medicine.
Emily was told her daughter would not survive past one year.
"I just didn't even believe it. I couldn't even fathom it. My vision, when I was pregnant with her, was to see her running around in the backyard and going to school and having friends; and that's just not what the outcome was," she said. "To see her like go through that and be hooked up to all these monitors and just constantly going through all these medications; I just kind of spaced out. I didn't even really know what the doctors were even talking about at one point because it was just too much at once."
Today the little girl that doctors gave one year to live has grown into a toddler with sandy blonde pig-tails and serious dark green eyes. Though Sierra has outlived the time frame doctors gave her, she has a cortical visual impairment and cerebral palsy. She is not able to walk or talk. Despite the little girl's trials and tribulations, her mom says that she is as sassy as any four-year-old. Her family who has also gone through a painful and sometimes numbing rollercoaster of emotions have done everything in their power to make their daughter's life joyful.
"We try and get her up and moving as much as we can, we'll jump, we'll bounce her in our arms. My husband's rigged up her jolly jumper so that she can get her legs moving," Keim said. "We've got a standing frame for her, lots of equipment to help her be a part of the family as much as possible. She has her days like a normal four-year-old. She's quite the quite a little miracle we have."
Because Sierra can't express herself verbally, her parents have learned other ways of communicating with her, but it's not without hardships.
"There are days where I just have no idea what she needs or what she wants. The only thing that we really know is when she's hungry, she will smack her tongue around or move her mouth quite a bit. If she's frustrated with something, she'll move her arms up and down quite a bit, or she'll like kick her legs when she wants to move."
Though some of the medications and the costs for the various medical equipment Sierra needs are covered, not everything is reimbursed. Hence, the family decided to start a fundraiser for Sierra.
Thus far, approximately $700 dollars has been raised.
"That will cover her standing frame cost as well as the medication. We're hoping to get at least $1,000 if we can so that we can pay for some more of her wheelchair maintenance costs."
Sierra's mother says her little girl just finished out her first year of pre-kindergarten and absolutely adored school and has made some wonderful friends. Her mother hopes that in seeing Sierra, people will understand that not everyone is perfect, but that those imperfections are what make us perfectly human. Perhaps one of the strongest arguments for Sierra being like any other four-year-old, is that despite her being primarily fed through a gastrostomy tube, she has a particular pudding that she adores above all else; butterscotch.
"I also hope that she continues to have the amazing friends that she made in pre-kindergarten this year and that she still enjoys life as it is and we will enjoy her for as long as she'll be here if that's forever or not."
Send your news tips, story ideas, pictures, and videos to email@example.com