Ethan was diagnosed with Dandy Walker Malformation, (missing his cerebellum) Tetralogy of Fallot, (pulmonary heart disease) Joubert syndrome which includes precocious puberty, retina deterioration, liver and kidneys failure, all areas we will have to follow closely for the rest of his life. He was born with hydrocephalus, chronic aspiration, continuous GJ tube dependence and due to his medical diagnosis, has an overall intellectual delay. He follows with the following medical specialists: neurology, neurosurgery, endocrinology, ophthalmology, gastro aerodigestive clinic, nutrition, otolaryngology, orthopedics, physiatry, urology, pulmonology and cardiology, as well as occupational therapy, physical therapy and speech. He is reliant on someone by his side for most activities and needs.

Ethan has had 14 surgeries, 5 of which have been brain surgeries to address his chronic hydrocephalus. He had his first open hear surgery at 2 months old, and several orthopedic surgeries. He has had countless sedations and tests, and travels to Boston monthly for appointments. Despite all this, Ethan has proven to the medical community that he is an anomaly of what is written on paper. He goes once a week at outpatient Physical Therapy, learning to operate a power wheelchair, walk, sit and stand independently. He is currently utilizing an AAC device, using his head to activate buttons to communicate with peers. He is in a full inclusive classroom at school, in a loving 5th grade class where he participates like all the other students.

While we have the basic resources to provide for Ethan, there are many needs that constantly arise. Ethan has many medical appointments and will constantly need care. The need for equipment is always on going, as he grows bigger and stronger.

Although Ethan cannot verbally speak, Ethan has shown time and time again he loves to be outdoors, whether traveling, riding a bike, going for long walks, and adaptive skiing. We are currently hoping to raise money for an adaptive tandem bike for him to go on long bike rides with us.

While we have modified our home to be more accessible, w have not yet been able to modify a bathroom for him. We would love to be able to have a roll under sink and roll in shower to allow for some normalcy for hygienic needs.

Any donation given to Ethan will always benefit him and help hi reach the goals we have in place for him. Our family is continuously grateful for the love and support from the Annies’ Angel’s Community.

Sincerely,

The Barrs Anastacia, William, Billy & Ethan