From: Amy Cavlovic

To:  Debbie Shimizu

Subject: Thank you and more

Date: Friday, April 14, 2006 12:43 PM

Dear Mrs. Shimizu,

My name is Amy Cavlovic.  My niece, Hailey Reese Cavlovic, died on April 6, 2006 from Alper's disease.  This past Wednesday, I was doing some  research on-line and found this information on the Christini Fund.  While reading about your beautiful little one - I also learned how your efforts directly led to the researchers being able to discover the genetic cause of  Alper's.  How could we ever thank you all for this?  Hailey has been battling for such a long time, and it was just days before she passed that we received notice of her diagnosis.  We all, all her big people, the doctors and nurses all had hoped for so long to be able to find out what was wrong with Hailey and make her better - she was a fighter and so very strong. Upon learning of her diagnosis we knew that there was nothing we could do to cure her.   Hailey's Mom and Dad are expecting a baby - and again, thanks to the work you all have done, are having genetic testing done.  I want you to know that we as a family, in Hailey's honor also plan to start a fund or foundation.  It would be lovely to meet you and thank you all in person and perhaps down the road, we could collaborate.  I have talked to some of Hailey's doctors and they will all do whatever they can to help.  I feel like Christini has been Hailey's angel.  Hailey was a joyful baby - a true blessing and our greatest gift - in her honor and in memory of Hailey, Christini, and all the other little ones who fight these cruel diseases we hope to do as you have done - bring awareness, raise money - and fight.

Thank you again - words can never begin to describe how brave and amazing I think you all are for directing your energies as you did - God bless you.

Please let me know if it would be possible to meet - I would truly consider it an honor.

I am attaching some photos of Hailey.

Sincerely,

Amy