Owen has a condition called Arthrogryposis, which limits the use of his joints. He also has Thoracic Insufficiency Syndrome (TIS) which has made him ventilator dependent. In additon, he also requires a G-tube for feeding. Owen is the recipient of a VEPTR which requires surgery for adjustments a couple times a year as he grows. The goal of the VEPTR is to provide adequate room in his chest for his lungs to function properly.
Owen sees a majority of his doctors at the Children’s Hospital of Philadelphia (CHOP) as well as Johns Hopkins and often requires extended stays there. These prolonged hospital stays (often many weeks) are difficult on the family, as the travel back and forth as well as time off from work puts an emotional and financial strain on Bob, Kristin, and April (Owen's 9 year old sister). Most recently, the VEPTR rod in Owen's back has become infected, sending him back to CHOP for emergency surgery. It is undetermined how long he will remain in the hospital.
Please read more about Owen's journey on his
Caring Bridge site:
In addition to the hospital visits Owen must endure a few times per year, he requires a vast amount of equipment and accomodations. A lot of these things are covered by insurance, but some of it is not. Most recently, Bob and Kristin had their vans retrofitted with wheelchair ramps to make transporting Owen in and out of the cars much easier. This was an extremely costly "out of pocket" endeavor that never could have been possible without the help of "Get Goin' For Owen". The additional strain of maintaining two households equipped with Owen's gear, supplies, and appropriate accomodations has been challenging as well. Yet making sure each house is "Owen-ready" is vital for his comfort and safety.
Owen's family appreciates your help. Bob and Kristin have taken occasional extended leaves from work since Owen was born. There are some instances where a nurse has not been available and time off from work is neccessary. There have been costly accomodations that needed to be made at home for Owen, and some of the cost of the retrofitted vans stills weighs heavily on their wallets. In addition, there is no telling of what may be expected in the future due to Owen's chronic condition as he continues to grow. Most notably, Owen may require an electric lift when gets too big for his parents or nurse to lift him.
Please help out in any way you can. Every little bit counts and is much appreciated! Thank you!!!
- Ge Clark
- John Roberts
- Mary Longeway
- sharon gaudino
- Shawn Hannold
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