Our son Ethan is an exuberant, loving and courageous boy who loves football, reading, skiing, traveling, and playing with his brother. He is like any early teen; except he has already had a lengthy medical journey. Ethan was diagnosed in utero with Dandy Walker Malformation at 20 weeks. Our life as we had come to know took a dramatic turn, with countless appointments in Boston, making it hard to carry on life as normal. We had to make big adjustments, and Anastacia resigned her career and has continued in a medical caregiver role.

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 kidney degeneration. These are 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 his activities and needs.

Ethan has had more than14 surgeries, 5 of which have been brain surgeries to address his chronic hydrocephalus. He had his first open heart 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 to outpatient Physical Therapy, learning to use a power wheelchair, walk, sit and stand independently. He is currently using an AAC device, using his head to activate buttons to communicate with peers. He is in a fully inclusive classroom at his local middle school.

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. Equipment is always a need, as he grows bigger and is rapidly becoming more difficult to move.

Although Ethan uses multiple ways to communicate, he has shown time and time again his love for the outdoors. He loves to travel and explore new places. He really enjoys riding a bike, going for long walks, and adaptive skiing. We are currently hoping to raise money for an adaptive tandem bike and an adaptive beach/trail chair for him to explore more of the world he is in and give him as much autonomy as possible.

While we have changed our home to be more accessible, Ethan’s needs also include a roll in shower and changing station for his own sanitary needs. This improvement would also allow other caregivers to help us care for Ethan, should one of us not be able too.

Any donation given to Ethan will always benefit him and help him reach the goals of autonomy, and community inclusion. Our family is continuously grateful for the love and support from the Annies’ Angel’s Community.

Sincerely,

The Barrs Anastacia, William, Billy & Ethan