LAL-D Solace is a place to remember the people we loved and lost to LAL-D, and to provide a safe haven of support for those of us dealing with loss.
The LAL Solace patient support organization was founded by Mary and Stephanie, two mothers of children who succumbed to Wolman disease, now called Infantile LAL-D.
Since enzyme replacement therapy with Kanuma (sebelipase alfa) was FDA approved in 2015, there is much hope for a healthier future for people with LAL-D. Still LAL-D continues to be a life-threatening disease, especially for patients who are not diagnosed in time, or who are unable to receive enzyme replacement therapy.
Although loss of a loved one is an inevitable part of life, losing a child is the most difficult loss one can endure. The only thing that could possibly be worse is losing more than one child to disease, which is why genetic counseling must be offered to families affected by LAL-D. To find a genetic counselor go to: https://www.nsgc.org/page/find-a-gc-search
The pain of losing a family member to a rare genetic disease is not easy to talk about. Some friends and family may want to avoid the subject, not out of indifference but perhaps for fear of saying the wrong thing or just not knowing what to say. It probably does not mean that they don’t care or want to help.
There is no right or wrong way of grieving. No road map or instruction book. Some people need to talk, to express their anguish. Some people cannot speak about their pain or risk falling apart completely, like diving into a bottomless abyss. Parents may be too stricken to work or take care of the family. Another may lose themselves in work where they feel safe and a sense of control. Some people try to self-medicate or “move on” because they are not able to process their grief at the time. Some even make jokes, which is another coping, survival mechanism.
Often spouses and family members have different ways of responding to grief. Being accepting, no matter how differently people need to process loss, and for however long will be a gift to those who are suffering- even if they don’t appear to be outwardly grieving, at least not in the way expected. One family who lost their baby to a rare disease kept the baby’s voice on their answering machine greeting for several years after the baby had passed away. That was their way. A father celebrated another child’s wedding only a few months after losing his daughter to a rare disease, looking toward a new generation. He still loved his daughter who passed away deeply, and thinks of her every day years later.
Whether we keep the loved one’s reminders in sight or put them away, their memories never fade, but the acuteness of the pain of their loss in time does diminish, though perhaps never completely.
This is a place to share memories, photos, feelings, both good and difficult, happy or sorrowful, a place to tell our stories, offer ideas and provide support.