Our son Ethan is an outgoing 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 at 20 weeks in utero with Dandy Walker Malformation, a brain malformation that causes significant disability. Our life as we have come to know took a dramatic turn, with countless appointments at Boston Children’s Hospital, making it hard to carry on life as normal. We had to make big adjustments quickly, with one parent continuing to work and the other having to make a change. Ethan’s mom resigned her career and has continued as Ethan’s primary medical caregiver.

Over the years, Ethan has since been diagnosed with MKS1 Related Disorders which include the findings Dandy Walker Malformation, (missing his cerebellum) Tetralogy of Fallot, (pulmonary heart disease) Joubert syndrome and Meckel Gruber 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 several orthopedic issues. He is consistently followed by 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 14 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 a speech device, using his head to activate buttons to communicate with peers. He is in a fully inclusive classroom at his local middle school. He loves to participate in sports and is on his school’s cross-country team.

While we have the basic resources to provide for Ethan, there are many needs that simply not affordable. Equipment is and always will be our biggest need. As he grows bigger and is rapidly becoming more difficult to move, we always will need adequate and comfortable wheelchairs, standers, beds and more.

Ethan recently suffered a traumatic leg break, that sent his mobility progress back substantially. He loves to be active as often as possible, but without the right equipment to support him, that is an impossibility. As Ethan has healed, it is clear he has missed out on the activities that have given him such a good quality of life. Our family goal is to continue those activities for him. We are currently hoping to purchase an adaptive tandem bike and an adaptive beach/trail chair for him to explore more of the world, and give him as much autonomy and adventure as possible.

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