All of you, in one way or another, have walked alongside Jessica...remembering her in your prayers, visiting and helping, and joining in the fight against Niemann-Pick Type C (NP-C), the cruel disease that has taken away her ability to walk, to talk and to laugh. Mom and Dad are often asked how they cope day after day. The answer is threefold, yet simple: unwavering love and devotion to Jessica, faith, and steadfast support from family and friends like you.
A favorite quote which shines light onto their arduous journey each day is, "With faith in our right hand and courage in the left, we are not alone." Love and support from other strengthens both faith and courage. Over the past ten years, with the help of supporters of Fight for Jessica, money has been raised for scientific research, awareness for the cause has been created, and Jessica and all of the children afflicted with NP-C have been honored. Jessica’s condition requires that a considerable amount of time and energy be devoted to her care and well-being.
There will not be a formal event this year. You are invited to gather loved ones for a night at home in honor of Jessica. There are two ways you may continue to make an impact. First, please take a moment to write a note to Jessica and the family and post it here so that your message may be read to her. She would love to hear from you!
Second, please consider making a monetary gift this year directly to The Jessica Leoni Trust to help cover part of the enormous cost in providing Jessica’s much needed 24-hour care. Many friends over the years have expressed an interest in giving directly to Jessica’s care and medical expenses. As a committee, we are most grateful for this generosity and we know the family would be as well. While this is not tax-deductible, you can be assured that your gift will go directly to assist Jessie. You may mail your support and a note to the family to:
The Jessica Leoni Trust
P. O. Box 83744
Los Angeles, CA 90083-0744
If you wish to support medical research and receive a
tax deduction for your gift, your donation can be made to the
Ara Parseghian Medical Research Foundation (APMRF) 501(c)
(3) and forwarded to the same P. O. Box above.
Jessica has taught us all just how precious life is and how connections and making memories is what life is all about. You can be assured that each committee member and our families will be hosting a "Celebrate Jessica” night. Please check the blog as others post some of the festivities for all to see. We encourage you to do the same.
God Bless You!