The Fear of Losing a Child With Angelman Syndrome

I just watched a video, that showed a mother of a child with Angelman Syndrome, state her concerns about losing her daughter to seizures. While the majority of "Angels" do live generally long lives, the reality of what she said is true. There's no study that I am aware of, that shows the percentages of angels who will lose their lives to seizures, but I know of quite a few. One is too many, yet too many have their lives cut short by seizures, that leave their families in sheer pain and despair. I've been there. My son lies six feet deep, in a cemetery with a tree that overlooks his gravestone. Right now, he would almost be seven years old, but a seizure didn't allow for that possibility. He will not continue going to school that he loved, or hear a bus driver sing "Happy Birthday Tommy" over the public address system.

Sometimes I stop by his plot, and just cannot stop weeping. Its been over a year and a half, and I will never get over it. I hurt for him, for my wife, his grandparents, relatives, friends, teachers, and for myself. My heart is so heavy, and there's been feelings of angst, guilt, and of pain that sometimes seems to be a burden too much to handle. Hearing of another family, whom I do not even know losing a child, or contending with seizures, causes me to cry buckets of tears. That is okay, but I dream of a day when a father does not have to carry his son or daughter's coffin, and watch it close upon their little one. I think about the mother, whom gave birth to this child, giving them a kiss before sending them to their grave. It is so unfair, that a parent has to bury a child, because it is supposed to be the other way.

Many share this same journey, and I am thankful for these kindred spirits. Its faith in a loving God, and these folks whom have showed me a new road in life. The pain is always there, like a dark cloud that refuses to stop chasing me, but to give up and accept defeat, that is simply not going to happen. Although there is pain, that has ripped through my soul, there are other parents and families that do not deserve the same fate. None of us are perfect, but no one deserves to bury their child, and by getting folks like the Vanderbilt University Kennedy Center help, then perhaps we can save someone from this soul shattering experience. Quite a few Angelman families and others have lost their child to seizures, and we must prevent them from such a horror. Please pray that a cure for these seizures can be discovered, and if you can find the time, do what you can to help Vanderbilt make the breakthrough that will stop the faucet of grief.