Morgan battled Mitochondrial Disease during her short life of 2 1/2 years. She is eternally healed in heaven.

May 12, 2004 - December 16, 2006

Morgan is our second child and has the best big brother Carter (born in May, 2002).

She was born 7 weeks early on May 12, 2004. We knew Morgan would be early because Leslie, her mommy, was on bed rest in the hospital for 6 weeks with a rare pregnancy complication- polyhydramnios (too much amniotic fluid).

Morgan was a very good size for a preemie and weighed 5 lbs, 15 oz. She was doing so well and was going to come home on May 24th, but at 2:30a.m. on May 22nd, we received a phone call that was only the beginning of this journey. "Morgan has had a seizure" said the neonatologist on the phone -we didn't know if this was a nightmare or really happening.

We were in the NICU bright and early that morning to meet with the doctors. At first they thought it might be a side effect of Reglan (a drug for reflux) but later learned it wasn't the Reglan as the seizures continued- despite being taken off Reglan. The neurologists were then brought in and the roller coaster ride was only beginning. We still do not know why and stopping the seizures continues to be an ongoing challenge. After 5 weeks in the NICU, Morgan came home on June 16, 2004.

On July 12, 2004, Morgan was admitted to the PICU at the Children's Hospital due to uncontrollable seizures- AKA status epilepticus. She was put into a drug induced coma to stop them. During her stay in the PICU, she received 3 blood transfusions and underwent a spinal tap. In order for geneticists to test for specific metabolic disorders, the spinal fluid must be studied. All tests were normal- meaning we were told she did not have a metabolic or chromosome abnormality. After 4 weeks in the hospital, we brought Morgan home for the 2nd time on August 9, 2004. It was a miraculous day at our house since just 2 weeks earlier her doctors had told us she may not make it and we might need to decide how long we would want technology to keep her alive.

On August 20, 2004, we visited Boston Children's Hospital to meet with one of the top Pediatric Neurologists in the country- Dr. James Riviello. He is amazing and thoroughly reviewed Morgan’s history. We didn't leave Boston with a cure for her seizures, but it is nice to know we can always call him with questions or concerns.

On November 2, 2004, we consulted a neurosurgeon due to Morgan’s asymmetrical head shape. The CT scan was compared to previous scans, and nothing could have prepared us for the news we were about to hear: Morgan’s brain had atrophied due to the seizures- thus her brain wasn't growing- but had rather lost volume and filled in with cerebral spinal fluid. Morgan’s skull fused prematurely- referred to as secondary crainosynostosis- because her brain wasn’t growing.

On November 3, 2004 Morgan had her first surgery which required burr holes be drilled in her skull in order to drain the blood and fluid that had accumulated. The surgery was successful, and she spent a few days in the hospital. The following week, she had a permanent shunt put in. The shunt is on the left side of her brain (between the brain and skull) and an internal tube drains the fluid into her tummy!

In the spring of 2005, we had another consultation in Boston. He again reviewed Morgan’s care and recommended we see the geneticist again in Atlanta. We have never been given a diagnosis- other than developmental delays and seizures. There has always been a question regarding her MRI and many radiologists had differing opinions. One would say it was normal and the other would say it might be Cortical Dysplasia. We met with the geneticist to see if there were any other tests that could be done to try and figure out what is going on. The next and last step would be a muscle biopsy to test for mitochondrial disorder. It would require surgery- a 2 inch incision in Morgan’s thigh where a piece of muscle would be cut out.

On July 11, 2005 Morgan was admitted to the hospital to begin a special Ketogenic Diet in an effort to reduce her seizures- since medicine doesn’t seem to work. She discontinued the diet in February of 2006- her seizures were still frequent, and it was causing GI problems.

Morgan has hypotonia meaning her muscle tone is less than what it should be. During therapy sessions, we work on trying to get her to hold her head up and coordinating her movements (hand to mouth, etc...).

On February 23, 2006, Morgan had a surgery for a G-tube, a muscle biopsy to test for Mitochondrial Disease, an appendectomy & a Ladd's procedure (to correct a mal-rotation of her intestines).

In May 0f 2006, the muscle biopsy confirmed Morgan does have Mitochondrial- Complex IV Deficiency.

In October of 2006, Morgan got a G-J tube because her stomach had stopped working. All of her feedings would go in the J portion of the tube- which would bypass her stomach and go directly into the small intestine. Morgan was in intense pain with the J tube and couldn’t handle the feedings.

Morgan Elizabeth was in and out of the hospital the last few months of her life. She came home with hospice care on December 7, 2006 and went to heaven on December 16, 2006.

WE LOVE YOU MORGAN!