When you first learn that your child has a rare genetic disorder, one of the first questions asked is, "Does this change my child's life expectancy?" It's a hard reality to come to terms with, something we in the Kabuki syndrome community are faced with on a daily basis. Sadly, not all of our kids have been able to overcome their battles. This page is dedicated to those who fought as hard as they could, but ultimately lost the battle.
"And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow–not even the powers of hell can separate us from God’s love." Romans 8:38
"For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11