Coping with Grief and Loss in LGS
Losing someone you love, especially a child, is painful and overwhelming. Some of the immediate emotions in grief are shock, numbness, denial, confusion and disbelief, all of which can act as a cushion against the full impact of your loss. As time passes some of these early emotions may begin to wear off as others emerge including guilt, anger, loneliness, despair, sadness and regret. These feelings and emotions are all a normal and natural response to the death of someone you love.
Bereavement & in Memory
Every individual will process grief in their own unique way. Some can and will express their pain easily and openly, while others will keep their feelings locked inside. There is no "right" or “wrong” way to grieve. Be patient with yourself and with your family members. Seek out the support of your extended family and friends and if needed, get professional help to manage the healing process. All of this is important not only for yourself, but also for your surviving children. It is important that you recognize their loss and grieving also, and that they know that you love them.
Below are some resources that we hope will be of help:
SUDEP (Sudden Unexplained Death in Epilepsy) and Tissue Donation
The LGS Foundation supports researchers in efforts to prevent or cure LGS so that future generations do not have to suffer from the devastation caused by LGS. You can help in this effort by making the generous gift of tissue donation. Investigators collect blood and/or tissue samples from individuals who have passed away as a result of a seizure disorder.
We understand that tissue donation occurs at a time of bereavement and profound loss, and that it is a difficult and personal decision that may not be right for everyone. However, by making this donation, you advance research and improve the chances of finding a cure for LGS. For more information, please refer to NYU Langone Medical Center's Organ and Tissue Donation page.
North American SUDEP Registry (NASR)
The North American SUDEP Registry facilitates the donation of DNA and brain tissue of those who have suffered from SUDEP so that they may be documented and analyzed. NASR's mission is to unconver the risk factors, causes and mechanisms of SUDEP so that they may improve future epilepsy treatement and SUDEP prevention. NASR also provides families with SUDEP specific resources and support services. For more information, please refer to the North American SUDEP Registry website.
In Loving Memory
Many families choose to honor the lives of their deceased loved ones by requesting that donations be given to the LGS Foundation in lieu of flowers. This is a wonderful way to celebrate the life of a loved one while giving an everlasting gift that works to find a cure for LGS.
The LGS Foundation is currently accepting memorial submissions via email to be placed in the slide show above. Submissions should include the following:
-The first and last name of your loved one
-Your loved one's birth and passing dates
-At least 1 photo of your loved one
-Any additional comments are welcome
If you are interested in having a loved one featured in memorial on our site, please send an email to
Monkeys in Memory of Maggie
In November 2016, the LGS community lost another epilepsy warrior to SUDEP named Maggie. In order to keep her memory strong and to help raise awareness of LGS, Maggie's family would like other LGS families to receive a monkey in her honor. The LGS Foundation will ship one of these adorable, cuddly animals to you, free of charge. To order, please fill out the form below. At this time, we can only ship to the United States and Canada.