About Alaina
Bravery
Alaina was born with a rare and fatal lung disease. Alaina suffers with respiratory distress and failure to thrive, despite assisted ventilation and surfactant replacement therapy. The disease carries a poor prognosis and children with this disorder do not survive beyond the first few months of life. The only effective treatment is lung transplantation. Support treatment for Alaina is Oxygen therapy 24/7 and GTube feeds to avoid the risk of aspiration to her lungs
Alaina has spent most of her life in and out of Sick Kids hospital. Undergoing several surgery's and invasive tests. A rough go from the start. Alaina was born at Mt. Sinai Hospital and transferred to Sick Kids at 4 months. Alaina finally went home for the first time at 8 month of age. Not for long...Alaina spent more time in Sick Kids than home from the age of 8 months.
Treatments
Alaina is now 10 years old!. A far cry from the prognosis doctors have given. Alaina has beaten the odds so far. Although Alaina is connected to an oxygen concentrator 24/7 and fed by a tube in her belly, Alaina is a normal happy 10 year old. Alaina suffers from failure to thrive weighing only 40 pounds and suffers from pulmonary hypertension, extreme reflux disease and Arterial septal defect as a result of her disease.
There is no cure for this disease. In fact, there is absolutely no research being done to find a cure. There is no foundation for this disease. Alaina's family does not have a place to turn as specialists are not working to understand this disease or find new treatments. Alaina's 12 year old older brother Thomas is unable to attend school or play with friends because of the fear of bringing a virus home to his sister.
Keeping her safe
The sacrifice is heartbreaking in one sense and a lifesaving effort in another. Alaina's parents have also made a life changing sacrifice in order to keep Alaina safe. In 10 years they have spent little to no time with family or friends in the flu season and take extreme precaution otherwise. All in an effort to keep Alaina alive. A small sacrifice in a family's eyes. We are asking to please help raise awareness about Princess Alaina in hopes that one day research might save her life.