1-7-14 update: Thomas as of today will be home. Due to current infection and risk of more exposure.
Thomas is a 9 year old boy who has 2 very rare diseases. He has NKH which is
Nonketotic Hyperglycinemia which is a rare metabolic condition. He also has a Primary Immune deficiency. He has little to NO protection against every day germs. A simple cold for you can mean a life threatening infection for him. He does do treatments every week that help replace some of what his body does not make. He is out of school more then he is in. He can not attend school from January to usually May due to high risk of infection. He goes half days the other part of the year. This leads me to why we are doing a fundraiser. Technology today has come so far, Verizon has created a robot called VGo which goes to school for Thomas and sits in the classroom and allows Thomas to sit at home and be " in the classroom". It is truly amazing and a life changer for a child like Thomas. The cost is 6000 through Verizon and then we would own it and only have to pay 1100.00 a year for insurance and maintenance. We are asking for you help in making this dream possible. This is fairly new technology and we hope with time down the road schools will have the funding to provide these for kids who are out for any medical reason. But for now we are on our own.
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- michel pathinvo
- Marianne Aughey
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