The story of Mary
My first grandchild was born on July 23, 2004. It was the most amazing day of my life, when I met the son of my son, Adam, love at first sight. 17 months later he went into our Children’s Hospital with a tremor in his hand. 10 days later they turned off his machines and he died, on December 30, 2005. Alpers Disease. What a horrible word – Alpers! How I hate it.
Then, in 2011, another, unplanned, pregnancy. Tested for Alpers – positive! Horror! That was December. Lucy was born in May 2012. Again, love at first sight – probably more so as we knew she was only on loan to us. What an amazing personality that little girl had. Wonderous smile that charmed all. Was never as strong as her brother had been, but was it because we knew? We could not fault her care. It was in place from her birth, but there was nothing anyone could do once the Alpers became active. Our beautiful girl spent the last 12 weeks in the Children’s Hospital, enduring so much, before a final massive seizure killed her on May 13, 2014, 10 days before her second birthday.
Alpers is a Mitochondrial Disease, autosomal, meaning it comes from both parents having the mutation. It is, thankfully, rare. But it has no treatment or no cure. There is only one prognosis – death. My son and daughter-in-law have buried both their children. Can anything worse happen to any parents?