I Love Two Who Are Rare

A year ago from today, on Rare Disease day, we lost our sweet Jake at 4:02 a.m, Feb 28, 2020.

In 1994, when Paul and Jake were diagnosed with Leukodystrophy, vanishing white matter disease (VWM) at the ages of 18 mnths(Paul) and 3 years (Jake). We were told that there was no cure and that they would not make it past their teen years. Jake’s case did not seem as severe as Paul’s . Jake lived twice as long as his brother, Paul. He always seemed to understand and to accept death and to one day being in his Heavenly Home .

How he comforted us through Paul’s dying journey by drawing angels and taping them around the walls where Paul lay for his last hours. He told us, his parents that it was okay to leave his home for the last time, before spending his dying journey in the hospital, and that Paul and he would be doing EVERYTHING in Heaven.

He loved God, his family and friends and with his matter of fact ways, he knew he could not continue suffering from the continuous seizure activity. He was ready!

We remember so many cute Jake stories and we remember his great love for us and our love for him… but we also know it was his time. During his last hours with us, Jake’s hand remained HOT, not warm but hot and we felt that the angels or his brother were helping him through his last hours.

Pray for your family and wonderful friends, sweet son! We will always treasure your gift to us!!!

Written by Jake and Paul’s mom.