In 1997, our daughter, Emily was born with a rare genetic syndrome called Trisomy-18. Trisomy-18 is chromosome disorder and is terminal. Only 5% of babies born with Trisomy-18 survive their birth and only 1% thereafter, if they make their first birthday. Emily survived until the tender age of 2 years, 2 months, & 2 days. Emily was a miracle!
Emily passed away from congested heart disease associated with the Trisomy-18. At only five days old, she underwent open-heart surgery. Open heart surgery is not a cure for Trisomy-18, but an opportunity for a chance to survive and we felt Emily deserved that chance.
Emily recovered in intensive care at UNC-Chapel Hill Hospital in North Carolina for approximately one month while she miraculously gained strength, weight and determination to survive !
Once she became nutritionally stable, we were able to take her home. We will never forget the joy we felt in our hearts the day we were able to bring our Emily home....what an amazing moment!
Our goal was always to bring Emily home from the hospital. After all, we went to the hospital to have a baby....of course we were suppose to bring our baby home. We were not aware or prepared that Emily would be born with Trisomy-18. We did not know what Trisomy-18 meant or what it involved. Now more than ever, we feel truly blessed to have had the opportunity to bring her home, get to know her, love her and enjoy her!
With the assistance of our local Hospice Organization, we had the health care support we needed for Emily to survive in a home setting. We found out that taking care of Emily would involve a variety of resources, which can be medically and financially challenging for any family.
Families that feel as strong as we do about bringing their terminally ill child home from the hospital should be able to make that choice and know they have the support from the Community and Organizations such as Hospice/Kids Path to fulfill this goal. Without Hospice/Kids Path, Emily's outcome may have been different. Children diagnosed with a terminal illness need special equipment, supplies, medications, and health care support from professionals in order to survive in a home setting. Most importantly, they need love and support from their families to strive!
KIDS PATH OF ALAMANCE & CASWELL COUNTIES organized a team of medical staff & volunteers to help assist us in caring for Emily at home! With Hospice support, we were able to focus directly on loving & caring for our sweet little Emily!
In EMILY'S MEMORY, we created "EMILY'S COOKIE MIX, INC." for the purpose of raising funds to help ease the financial burden families may face in bringing their child home from the hospital while continuing to receive the necessary medical support they require.
All funds raised on behalf of pediatric patients diagnosed with a terminal illness are directed to KIDS PATH OF ALAMANCE AND CASWELL COUNTIES OF NORTH CAROLINA. Emily helped pave an understanding how important community support can be and we want to help other families facing the same challenges we did!
THANK YOU TO THE KIDS PATH PEDIATRIC STAFF including Patti Gasparello, Sandra Gibson, Tracie Ingle & Lucy Kernodle... WE ARE FOREVER GRATEFUL for the love and support you showed Miss Emily and our entire family! Thank you!
Please support THE KIDS PATH PROGRAM by placing your ORDER TODAY or donating directly to the Program itself. Thank you for reading Emily's Story!
We extend our appreciation to those involved with Emily's medical care including the medical staff(s) and volunteers of:
The Alamance Regional Medical Center
The University of North Carolina
Chapel Hill, N.C
Burlington Pediatrics of N.C.
Blue Cross & Blue Shield of N.C.
KIDS PATH of Alamance & Caswell Counties of NC
McClure Funeral Home
Pastor Strelow and to all our family & friends for their love & support!
Emily's Cookies & Cakes
Burlington, N.C. 27215
Email us at: email@example.com