For Our Bereaved Families

We are here for you

My name is Kathy Leavens and I lost my son, Matthew, to LGS in 2013. As you read, please know that you are not alone.

Losing someone you love, especially a child, is painful and overwhelming. What you are experiencing is tremendously painful, and the wave of feelings you have right now is okay.

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 natural response to missing someone you love. Every individual will process grief in their own unique way.  Some can and will express their pain easily and openly, while others 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:

*We know this is a long list. At the LGS Foundation, we try to provide more than one vetted resource so that you might find one that is right for you. Please don’t hesitate to contact us if we can help.

We Remember: Our Forever Loved Memory Wall

The LGS Foundation Forever Loved Memory Wall is dedicated to remembering those we have lost too soon to LGS. We hope, one day, you will share your story.

Learn about our forever loved memory wall

Celebration of Life Butterfly Release

The annual Celebration of Life is a special time dedicated to remembering and honoring the impact left on the world by each person we have lost. The LGS Foundation will always honor the spirit of our loved ones whose lights continue to shine and light the way as we continue to strive for the cures for LGS.


Gifts made In Loving Memory &
Personalized Bereavement Cards

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 those living with LGS.

MAKE A GIFT in Loving Memory

If you would like to receive personalized bereavement cards for your loved one, please email for more information. A sample card can be found below. Families sometimes like to share these at the memorial service to raise awareness of LGS.

Sample personalized bereavement card

We are here for you

If you need anything or would just like to talk, we are here for you. Don’t hesitate to email me anytime at


Updated 3/21/23