The Barr Family Fund
The Barr Family Fund
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The Barr Family Fund Fund
Hello, we are the Barr Family! We have two happy little boys- Billy age 6, and Ethan age 4. At 20 weeks, we were diagnosed with Dandy- Walker Malformation (missing his cerebellum) and Tetralogy of Fallot (heart disease),Post- Axial Polydactyly, amongst several other anomalies with our son Ethan. Our lives were immediately stopped as we struggled to do what was best for our son after being told he would never walk, talk, smile, or even recognize us. We are happy to say Ethan just celebrated his 4th birthday in July, and while he cannot walk, talk, stand, or eat yet…he gives us the biggest smiles!
Ethan has had 12 surgeries in 4 years. The first was an open heart surgery, and G- tube placement at 2 months old. Shortly after his heart surgery, Ethan was diagnosed with Hydrocephalus, and had four brain surgeries, the most recent this past summer for a shunt placement. He also has had severe AVM Fistulas resulting in three angiograms. He has had countless sedations for tests, MRIs, and procedures. He has had several surgeries for hernia repairs, urology issues, and orthopedic surgeries. We learned Ethan also has a narrow airway and has a high aspiration risk, so eating by mouth is not an option. Ethan is only J tube fed, on a continuous slow feed.
In mid 2018, we learned Ethan has a mix of syndromes including Joubert & Merkel syndrome, all genetically related to a gene MKS1. His risks of liver and kidney damage over time are high, and we are now constantly watching his organs to make sure they are healthy.
Ethan’s needs are evergrowing. While we have done as much as we can on our own, securing a handicap minivan, purchasing equipment out of pocket, etc, we are now finding things are too expensive for us to handle alone. Ethan currently needs a wheelchair ramp to get inside our home, an in home hoyer lift system, a motorized wheelchair, gait trainer and other equipment needs as he grows. We also have several more surgeries in his future, and the costs of hotels and meals/gas is always a challenge. Ethan has done amazing things in four years, after being told he never would. His willingness to move, learn and play are amazing considering his challenges. His brother has been incredibly supportive and has learned level of empathy that only can be experienced. Our family is always grateful for any support that Ethan may received to help him live a happy life.