A 1-year-old baby boy, Will Hagar and his family from Portland, Maine, were facing a twelve hour train ride or eight hour car ride to get to Philadelphia's Children's Hospital of Philadelphia. That's when members of a charity group of plane owners and pilots, Patient Airlift Services (PALS) stepped in the help the Hagar family get to their important treatment destination more than 400 miles away quickly and in style. Patient Airlift Services readily donated the aircraft, fuel and time to the cause.
The boy has rare genetic disease called Aicardi-Goutieres syndrome, also known as AGS. The disease is a rare early onset childhood, inflammatory disorder most typically affecting the brain and the skin. The majority of affected individuals experience significant intellectual and physical problems, although this is not always the case. Many sufferers of AGS experience symptoms such as persistent crying, difficulty eating, fevers, abnormal neurology and sometimes seizures.
The boy's father, Justin Hagar said that the disease has taken quite a toll on his son. He says that Will is often feeling miserable. With finances strained due to the expensive treatments and travels, the father said they were considering taking the train to get to the Children's Hospital of Philadelphia when offer from PALS kind of just popped up. The family jumped at the chance to take a plane ride that would be just under an hour which is clearly ideal when compare to the 12 hour train ride they were preparing for. Will and his family arrived at the North Philly Jet Center safely and the father said his son was smiling from ear to ear as he disembarked from the plane. The pilot, Mark Hanson, who has been helping people with PALS for over seven years, could not have been happier for the family.
Will Hagar will be undergoing extensive treatment by doctors at CHOPS in hopes of alleviating some of his symptoms that are caused by the disease. Unfortunately at this time there is no known treatment for the underlying causes of the disease, but the symptoms can be treated individually to lessen the grip the disease has over the patient. Medications used to treat seizures and epilepsy are often used. Physical therapy, Botox injections and sometimes surgery are often required to treat patients with this debilitating disease.