On January 20, 2008, my good friend Miles had tragedy strike his family. His son, Matthew Anderson, passed away after a brief battle with NonKetotic Hyperglycinemia (NKH). Here is a brief excerp from an email he sent me:
"We gathered Saturday morning to give Matthew Anderson Romney a name and a blessing at Children’s Hospital with two dozen family members and friends. At approximately 12:25 pm, the doctors withdrew his breathing tube. He rested peacefully in Amy’s and my arms throughout the afternoon and evening and passed away silently shortly before 4 am Sunday morning. We are saddened by the loss but grateful that Matthew has now returned to live with Heavenly Father.
The doctor’s official diagnosis is an extremely rare metabolic (genetic) disease called NonKetotic Hyperglycinemia (or NKH, for short). His body produces too much glycine (an amino acid we all carry). This overabundance of glycine is flooding his brain fluid and, at these high levels, is toxic to him. It has destroyed his brain activity. There is no cure or treatment. He would be a vegetable his entire life if he even survived. Thankfully, Ava and Dylan are not at risk for NKH since they have shown no symptoms of the disease. As NKH is genetic, however, there appears a good chance that Amy and I are both recessive carriers and all future children we bear will have a 25% chance of developing this same problem. We will continue to learn as much as we can about the disease and try to plan accordingly."
Miles is a great guy and his wife Amy is such a beautiful woman. Please say a prayer for Miles, Amy, and the rest of their family. The pain that they must be feeling at this time must be indescribable and thankfully, knowing how Miles invests in other people, there are probably many that are stepping up and surrounding him and Amy with love.
Miles, I am so sorry for your loss. I will continue to hold you, Amy, Ava and Dylan up in my prayers.
Then, this week I found this post through one of the blogs that I occasionally read. The gist of it is:
"The Joseph Salmon Trust supports parents who have lost a child by providing financial assistance to those who need it most. This may be to help with funeral costs or to allow the self employed a break from work while they come to terms with their loss. Grieving families have enough to deal with without worries about where they will find the money to say goodbye to their child or pay the next electricity bill. Nothing we can do can make their situation better, but we can do something to stop it getting worse."
The timing is impeccable.