The California-Hawaii Elks Major Project, affectionately known as Purple Pig pledges its commitment to addressing the unmet needs of disabled children throughout the states of California and Hawaii by developing a program of supporting services to aid these children at no cost to the families and without discrimination.
Ryan and Clair Blais were blessed with three beautiful daughters-Nyah, Kiera and Halle. They were a happy family but had always hoped to adopt a child. In time, they adopted Tristan, and two years later they adopted Isaiah, who is Tristan's biological brother. Life was very busy in the Blais household. When Isaiah was two, Ryan and Clair found out that another biological sibling needed a home. Ellie was born small for her age and had heart defects, lung disease and difficulty with feeding. This did not deter the Blais' from wanting to adopt her. Ryan and Clair brought little Ellie home a few days after she was born and she was welcomed with open arms by all five kids.
At less than three months of age, Ellie was referred to the California-Hawaii Elks Major Project for Physi cal Therapy. Her physician was concerned because Ellie had increased muscle tone and contractures of her joints. Denise Wilson was able to meet her right away to start Physical Therapy. Mom was given a home program to work on flexibility.
Ellie was seen for physical therapy only a few times before she was admitted to UC Davis Medical Center and underwent two open heart surgeries. She was hospitalized for over four months as she recovered
from the surgeries. Due to all of the invasive procedures that Ellie went through, she required a nasogastric tube for nutrition. She was unable to wean from supplemental oxygen and was sent home on continuous flow through a nasal cannula. Shortly after returning home, Ellie was able to resume physical therapy with the Major Project. Her parents were grateful to have in home therapy because Ellie was so medically fragile.
Ellie made good progress learning to sit, roll and crawl. Physical therapy was challenging at times, since Ellie was very sensitive to her joints being moved and having her muscles worked with. At l O months of age, genetic test ing confirmed that Ellie had Myhre's Syndrome. Some of the traits of this genetic condition that Ellie exhibits include tight muscles, pulmonary hypertension and hear ing loss, all which get progressively worse over time.
Since Ellie was on blood thinners, her parents were very apprehensive when she was moving around her environ ment, and especially when she was learning to walk. If she were to fall, it could be life threatening, so they purchased a helmet to help protect her head.
Ellie had developed oral defensiveness during her earlier hospitalization and despite her mother's considerable efforts would not resume eating or drinking by mouth. Therefore at 18 months of age, Ellie underwent surgery for a gastrostomy tube placement for nutrition.
Today Ellie's physical therapy goals are to maintain flex ibility and work on functional activities. Denise makes sessions fun by using toys that Ellie likes. For shoulder flexibility, she has Ellie reach for them above her head. To increase leg strength, Ellie does repetitions of sitting to standing from a bench, and for balance, Ellie steps over a hurdle. These are just a few examples of exercises done during her PT sessions and home program.
At almost five years of age, Ellie was hospitalized at University of California San Francisco Benioff Children's Hospital because of declining health. She underwent yet another open heart surgery. Recovery was slow and Ellie lost some mobility due to prolonged bed rest. She was discharged after about three months. PT through the Major Project was resumed, and although active and playful, Ellie now required frequent rest breaks.
In March of 2020 home appointments were stopped, therapy soon resumed through telehealth due to the COVID-19 pandemic. Ellie enthusiastically greets Denise each week and readily participates in the sessions. Denise uses computer programs designed for telehealth. Ellie picks from a variety of exercises and tries to mimic the images shown on the computer screen. Initially, she needed a lot of physical assistance to do the exercises. However, Ellie persevered and this has gradually improved and Ellie requires less help now.
The results of a recent heart catheterization confirmed that Ellie still has severe pulmonary hypertension. This was a sad reminder of the fragility of Ellie's condition. The whole family dotes on Ellie and it is obvious that she is the apple of her family's eye. Mom describes Ellie as funny, inquisitive and full of joy. She loves puzzles, music and movies. She's a big fan of "Frozen," but loves all the Disney princesses. Despite her physical limitations, she loves to dance and she tries to sing.
The members of Elks #6 hold a special passion for this project. If you join us for Sunday Breakfast we hope you will contribute to our Purple Pig so that children like John can Walk, Talk, See, and Play.