Condition: RYR1 Genetic Variation
City, State: Ellensbug, WA
Club: Valley View Elementary School Sparrow Club Service Hours:
Date Adopted: 3.29.2017
Louise is a beautiful three year old who was born with a rare medical condition--RYR1 genetic variation that affects how her muscles function. She has had three serious episodes which sent her to the hospital with high fever, high heart rate, and rapid breathing. The first happened when she was just an infant, another when she was two and a half years old and one just before her third birthday in August 2016.
Louise’s latest episode set off a series of seizures which caused severe brain damage. She lost all muscle control and communication. Louise is now unable to walk or talk and cannot swallow enough food or liquid by herself. She takes most food and water (and her medicine) by feeding tube.
Before the seizures in August Louise was the happiest little girl; she loved Daniel Tiger, playing blocks, riding her scooter, sharing pancakes and eggs with her dog Nori, and bedtime stories with her mom, Joanna. She used to be able to express herself with sign language which the family hopes she will regain.
Louise was in Seattle Children’s Hospital for two months last year. Over a month was spent in the Pediatric Intensive Care Unit (PICU). She spent her third birthday in the Medical Unit, near the PICU.
Over 100 doctors have worked with Louise, and she still goes to Children’s Hospital every other month. Soon she will be riding in her own wheelchair, that will help her (and her parents!) get around.
Today, Louise is still a happy little girl, and finds much joy in stories and kisses from her dad, Steve; wagon rides with Grandma and Grandpa, and preschool with new friends. But there are things she doesn’t like. She doesn’t like being in a room alone. Her feeding tube bothers her sometimes, and she doesn’t like spinach.
Louise is slowing gaining back some of the things she could do before. She is now able to hold up her head and loves seeing her mom and dad. To them it’s an encouragement even to see her eat a cereal puff, like a cheerio.
Funds raised in Louise’s Sparrow Project will be a great help to the family and ease the burden of extra costs related to her monthly treatment and therapy at Children’s Hospital. She will also need a wheelchair.
Louise’s family is excited and grateful to have the love and support of the Valley View Elementary Sparrow Club. Little Lou’s journey is just starting. It promises to be long and challenging. But the love and community service of the students and the support of the sponsors and community will help smooth the bumps Louise and her wonderful family encounter along the way.