As most of you know, we recently took part in a contest sponsored by NMEDA (National Mobility Equipment Dealers Association) for a new adapted van. Unfortunately, we weren’t one of the winning families but that won’t stop us! We have started fundraising with the assistance of HelpHOPELive and are committed to raising what we need to get a new van for Jacob.
Jacob is an eleven year old boy with FOXG1 Syndrome, a rare genetic neurodevelopmental disorder with severe cognitive and physical delays. He is 1 of only 159 known cases of FOXG1 in the world. He is non-mobile and non-verbal, has a feeding tube, is legally blind, has frequent seizures and is missing brain tissue. He functions at the level of a 12 month old and relies on a wheelchair for mobility, as well as an assortment of other medical equipment for daily life. Jacob is our hero.
Why is Jacob our hero? He is a silent teacher. He teaches patience, resilience, compassion, hope, flexibility, love, and so much more. Not only has he inspired our community to raise funds for a wheelchair accessible swing at the town park, but he has also inspired us to join other families and start the International FOXG1 Foundation (www.foxg1.com) to help research the disorder. Jacob is a pleasure to be with; he is happy, loves to laugh, enjoys spending time with his parents and sister, and has even developed his own way of saying “I love you”. Jacob is pure joy.
As of now, his travel is limited to school and medical appointments, since both provide wheelchair transportation. There are many things Jacob is missing out on, and an accommodating vehicle is not something our family can afford. A wheelchair accessible van would open up a new world for Jacob, which he could enjoy for years to come. That is where we can all help! A van can cost upwards of $50,000 and the we hope all of us can make this happen!
We have chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
Thank you for any help that you can offer.
Sincerely,
Heather and Greg Norwood
[email protected]
[email protected]
(413) 214-4192
For more information, please contact HelpHOPELive at 800.642.8399.
Thank you for your support!
