October Race to benefit:
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Serena Grace Morales was born around three a.m.on September 12, 2002
at Pocono Medical Center.
All seemed well for a very brief time, but doctors noticed that Serena was having problems breathing. Before the night was over, she was Life Flighted to Geisinger Medical Center in Danville, PA. There she was diagnosed with Congential Central Hypoventalation Syndrome (CCHS), and “Total” Hirschsprungs Disease.
CCHS is a disorder caused because no message is sent to the brain to breath when sleeping. Hirschsprungs Disease occurs when the large and small intestine lack the nerve endings to move stool through them.
Because of this disease, Serena could not be fed through her mouth, in order to prevent the use of her digestive system. Her first two months were spent at Geisinger in the Neonatal Intensive Care Unit. Each day, Serena’s condition remained precarious.
Serena’s mom and dad, big brother, grandparents, aunts and uncles, made the two-hour trip to Danville in every weather condition. Also during this time, Serena’s family began to prepare for her homecoming, relocating to a new and bigger apartment.
Serena was given a tracheotomy and an illi-ostomy. All essentials for nourishment (TPN) are given to Serena through a central line or Broveac, 17 hours a day.
In November, Serena was moved to Hershey Medical Center, in Hershey, PA, to a rehab facility where her parents, grandmother, and aunt were taught how to care for her at home. Although Serena was to have been home for Christmas, the necessary home nursing care could not be arranged in time. Serena was sent to Hershey’s Pediatric Intensive Care Unit where she contracted infections that forced her to remain hospitalized for still another month.
Serena finally came home for the first time in January 2003, but never remained at home for more than a few days. Infections and improper ventilation required several emergency trips back to Geisinger. On April 29, Serena came home and has remained at home ever since.
Her mother is Serena’s primary care giver, but nursing care is also provided by Nurse Finders for two 8-hour shifts daily, allowing her mom some “normal” time and rest.
The TPN feedings have caused Serena’s liver and spleen to malfunction and to be become enlarged. In March, Serena was evaluated to receive a liver and small bowel transplant. A transplant of these organs is necessary for Serena to be able to eat and use her digestive system. Without it, her liver will fail. Although the transplant was not recommended in March, doctors did agree to reevaluate Serena in six months after proof of neurological improvement. Serena’s mom has resolutely provided the proof by videotaping Serena playing with toys and interacting with her brother.
On Wednesday, September 24, Serena’s hemoglobin became dangerously low due to bleeding from her illi-ostomy. She was admitted to Geisinger until stabilized and then flown to Children’s National Hospital in Washington DC, where she will once again be evaluated for a transplant. It is clear that time is of the essence.
Serena’s family will need to travel and live with Serena wherever the transplant takes place. The family has already struggled financially throughout the past year. Both Serena’s mom and dad worked before her birth, but are down to one income. They have costs above what they can meet including travel, food, gas, motel, and Ronald McDonald housing. Serena has plenty of developmental toys for her age. She is in need of having her family close to her and all the love she can gather as she anxiously awaits her transplant.
Serena’s family have relied on the prayer’s of God’s people from around the world and are thankful to him, their family, the church and Joey’s Eagles for all the support given.
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We hope that you can all make it out to the race and show our support and caring for Serena and her family.
To make a donation to Serena and her family, please contact Joey's Eagles
By Phone:
Nelly Grampp (570) 588-3071
By Mail:
Joey's Eagles
c/o Nelly Grampp
77 Lake of the Pines
East Stroudsburg, Pa. 18301
By Email:
Or visit us on the web at:
Thank you for your support!
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