The Barr Family Fund

Our son Ethan, age 9 is a joyous, happy, and strong little boy who joined with a lengthy list of medical diagnoses. Ethan was diagnosed in utero with Dandy Walker Malformation at 20 weeks, and it was at that moment our life as we knew it had stopped, and we switched gears to a world that was new to us. Anastacia had to become a full time caregiver, leaving her career. Countless appointments and drives to Boston followed, making it hard to carry on life as normal. Ethan was diagnosed with Dandy Walker Malformation, (missing his cerebellum) Tetralogy of Fallot, (pulmonary heart disease) Joubert syndrome which comes with a list of side effects like precocious puberty, deterioration of his vision, liver and kidneys. He was born with hydrocephalus, chronic aspiration, 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, aerodigestive clinic, nutrition, otolaryngology, orthopedics, physiatry, urology, pulmonology and cardiology, as well as occupational therapy, physical therapy and speech.

Ethan has had 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 twice a week at outpatient PT and OT/Speech appointments to work on his walking, standing, sitting. He is learning to power and operate a power wheelchair to gain his independence. He is currently utilizing an AAC device, using his head to activate buttons. He is in a full inclusive classroom at school, in a loving 4th grade class where he participates like all the other students. His name means “warrior”, and Ethan has proven it many times again.

Our family has many needs, and while we can provide for Ethan, there are many needs that are constantly coming up. Ethan has many medical appointments and will constantly need care. The need for equipment is always on going, as he grows bigger and stronger. While we are able to provide for Ethan, the costly toll of equipment is one that always makes it

hard to obtain.

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. Ethan would love to have access to an adaptive ski sled so he can go anytime in the winter. We have both learned how to handle the adaptive ski sled, and it is something he can do with us together as a family. Ethan also is in need of a bigger jogger stroller, so he can go outdoors on rail trails in comfort and now have to worry about his wheelchair not making it on the terrain. While we have modified our home to be more accessible, we have not yet been able to modify a bathroom for him. 

Any gift towards a home modification for him to have a roll in shower, accessible sink etc, will give him the independence he deserves. Any donation given to Ethan will always benefit him, and our family is continuously grateful for the love and support from the Annies’ Angel’s Community.

Sincerely,

The Barrs

Anastacia, William, Billy & Ethan