The Hemispherectomy Foundation was founded to offer support and information, to raise money for camps, scholarships and to other financial needs of families who are touched by a child having a hemispherectomy or similar surgery. Care packages are sent to children in the hospital recovering from this surgery and information about this group is being collected for pediatric neurologists and neurosurgeons all over the US.
What is a Hemispherectomy?
A Hemispherectomy is a “surgical procedure in which half of the brain is removed or disconnected”. Because this surgery is severe, it is done often as a last resort – when drugs can’t control seizure disorders coming from one side of the brain, if a lesion is found in one hemisphere of the brain, for severe viral or bacterial infections that have damaged the brain, for tumors and for children with tuberous sclerosis. There are other neurological disorders that can affect one side of the brain and may lead to the need for a hemispherectomy. You can learn about the surgery and the need for it from the Facts page on the Hemispherectomy Foundation website.
When this surgery is done on children up to the age of 14, they have a better chance than older children and adults of gaining back the functions lost from the side of the brain that is removed. There is some paralysis on one side of the body and the risk other health problems. But, many children go on to live long lives and achieve remarkable things.
Support for Families
The Hemispherectomy Foundation provides an online support group and volunteers by phone so families can connect with one another before, during and after surgery. Information about specialists in your area and an up to date newsletter are also provided to members. There is no charge for any of these services. You do have to register since the group communicates about delicate and private matters.
One of the missions of the foundation is to help families financially. What better way to do that then with scholarships? The Winner’s Circle proudly promotes winners of their yearly $1000 scholarship recipients. This gives parents hope for their young children and encourages children who have undergone the surgery as well.
How to Help
Monetary donations are accepted and are tax deductible. Donations of small items, like stuffed animals, coloring books and gift cards are welcomed for care packages and for families in need. You can also volunteer to raise awareness, to help with fundraising or form a local support group.
Thanks to Dwan, from MommaDJane.com, whose daughter Gabby had a hemispherectomy in 2007. Dwan lead me to the foundation’s website. Gabby received a care package when she was in the hospital for a related surgery. This post is dedicated to Gabby.