Terri Ben Ami here.  I thought I'd let you know that our little girl, Nashi Danielle, passed away; she died two days after my last journal entry, on March 4, 2009.  (I last wrote on March 2, 2009, two days before she died.)

We knew her impending death was coming; we just didn't expect it to happen.  We figured that since she'd had lived as long as she did, she'd go on for another few years; however, that wasn't to be.  It was her time to go; God called her home, to be with Him forever in Heaven.

She now walks among the angels, able to see, talk, laugh, eat like a normal child, things that she was denied here on earth.  She rests in the arms of Jesus.

Understandably, Tovah, myself, Wally, and Hyman ask about her; Hyman is especially upset about her no longer being here.  He keeps looking for her, hoping that this is only a dream; it's really sad to see him looking so expectantly for her.  When he sees her empty room, he breaks down and cries uncontrollably, which tears us up.

Wally is still pretty young to fully grasp the concept of death; however we tell him that his sister had been sick, and she's now in a better place, where, for her, pain and suffering have come to a peaceful end.  She now lives with the angels.

Sometimes I feel that it is both my husband's and my fault that Nashi suffered in her brief life; she didn't deserve to have something as devastating as Canavan disease; she deserved to have a normal childhood. 

She didn't suffer:  she just died peacefully in her sleep.  We'd checked on her briefly; she seemed okay.  Breathing normally, face a healthy, pink glow.  When we went in her room to wake her up the next morning, we were shocked to find her cold and grey.  We instantly knew that she was gone.

Her funeral was on the 10th of this month.  Nearly a thousand people came to pay their last respects to a special little girl that touched many lives, even though she couldn't speak or see.  She taught us how to love, even in the face of seemingly impossible odds, and she made us see the beauty of those with severe physical and mental handicaps, that, even though they couldn't really do much for themselves, they still deserved to be treated with respect and dignity.

We still can't believe that she's gone.  More often than not, we spend many days crying, wondering why she had to go.  We often question God, wondering why He allowed her to go through so much; yet in His infinite wisdom, He taught us to rely on Him during the bad days and grow in our faith.

We realize He allowed Nashi to be born with this condition as a way to teach us perseverence, patience, love, and acceptance of the inivitable.  We realize that we are better people in having our daughter in our lives; she was an inspiration to all who came in direct contact with her.

As a result of this, we are going to start a foundation for families of children who have Canavan disease (or any other fatal, neurogenetic condition), as a way of bringing public awareness to these illnesses, and hopefully, allow people to be more accepting of those families who have gone (or are going) through what we did when Nashi was alive.  We are going to call it Nashi's Miracle and hope that we can reach out to even more families.

Even though Nashi is now with Jesus,  we will continue to carry on in her memory.  You will hear from us again, from time to time, to let you know how we are doing.  You haven't heard the last from us. 

May God bless you, and thank you for all the beautiful cards, well-wishes, support, and prayers during these past difficult few weeks; they've helped us in more ways than you can ever imagine. 

~Sincerely yours, Nashi's mom, Terri Ruth Ben Ami.  :(  >tears!<