Phil has a rare genetic disease, Ehlers-Danlos Syndrome type four (or EDS type IV). Out of Phil’s five children (as he calls them amazing children) two have also been diagnosed with EDS type IV, Andrew 20 and Addison who is 10 years old. EDS type IV is a terminal illness with no specific cure. Complications require immediate hospitalization and are potentially fatal. Phil has already suffered 2 life threatening events and his son Andrew suffered a collapsed lung in 2011.
No one plans for catastrophic health issues that will change the way we come to life forever. For Phil and his family, ordinary everyday things are difficult or impossible to do. With deficient immune systems, sensitivity to extreme temperatures, and the need to stay close to their doctors, Jennifer says they are learning to celebrate the simple pleasures of life. Short walks together in the shade at the bird sanctuary, a camping trip very close to home instead of summer vacation at Cedar Point, spending quality time together and “strengthening the home base” is the priority.
Phil was the sole supporter of the family. In December of 2017, Phil’s health deteriorated, and he is no longer able to work. He is under the care of several specialists at U of M for severe complications of the disease including blood clots and an aneurysm in heart. All donations will be given directly to the family to provide for their medical care.
We are looking to raise $5,000 by 8/18/18 to meet a generous donor match. Please help us towards that goal!
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