Our inspiration comes from a very special little girl Alaina Priore. Alaina was born with a rare genetic and fatal surfactant deficiency. Infants with genetic forms of surfactant deficiency present shortly after birth with respiratory distress and failure, despite assisted ventilation and surfactant replacement therapy. The diagnosis is made by genetic testing for the mutation in the child and both parents. 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.

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.

Alaina is now 5 years old. 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 5 year old. Alaina suffers from failure to thrive weighing only 24 pounds and suffers from pulmonary hypertension, extreme reflux disease and Arterial septal defect as a result of her disease. The reason Alaina is fed by a tube in her belly is to reduce the risk of aspiration to her lungs.

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 7 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. 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 5 years they have not spent time with family or friends in the flu season and take extreme precaution otherwise. This means they have not spent Thanksgiving, Christmas, New Years and Birthdays with friends and family. All in an effort to keep Alaina alive. A small sacrifice in a mothers eyes.

We are asking to please help raise awareness about Princess Alaina in hopes that one day research might save her life.

For more information you can go to 
www.princessalaina.com