Alexandria

Andri received a new heart on Saturday, December 17, 2005 at approximately 2AM (Friday night).

Andri was born April 1, 1996 in Atlanta (Snellville), GA and is our first-born child. At birth, we knew something was wrong when they took Andri away. Her joints were contracted and she had very stiff muscles with little movement. As she stayed in the hospital that first night we feared the worst while hoping for the best.

Andri was later diagnosed with Arthrogryposis and most of her issues resolved through physical therapy and one hip surgery (6 months). At 9 months she wasn't feeding and a subsequent doctor's visit and chest x-ray revealed that she was experiencing congestive heart failure (CHF) with severe mitral valve regurgitation (MVG). She stayed in the hospital for about a week and was given medications to improve her heart function. By week's end, the MVG had resolved to a very slight leak and Andri returned home on medication. We Believe in Miracles!

When Andri was two she suffered another episode of CHF and her doctor's in Seattle ordered a heart muscle biopsy. This muscle biopsy revealed her current condition - restrictive cardiomyopathy. She was also seen by a genetic specialist from Canada who diagnosed her with a very mild expression of Freeman Sheldon syndrome. For the next 6 years, Andri led a very normal life seeing the cardiologist about once a year and still taking some heart meds.

When we moved to the SE Michigan area in 2001 her scoliosis (diagnosed in 2000) began to worsen and she was put in a back brace that she wore every day to prevent her curve from getting worse. By 2004, her curve had gone from 35% to over 60%. Her orthopedic doctor strongly recommended inserting what is known as a growth rod along her spine to prevent the curve from getting worse. It is not uncommon for kids with muscle disorders to have rapidly increasing curves that can go quickly to 90%. In June of 2004 she had back surgery wherein a stainless steel rod was screwed along side her entire spine. The rod serves as an internal brace to keep the curve form getting worse - but it is only temporary. The plan calls for every 6-9 months to go back in and increase the length of the rod to allow her back some growth. When she reaches puberty, the rod is removed and a full spinal fusion surgery is performed.

After the rod insertion in June of 2004, Andri's heart took a turn for the worse and she had a hard time re- balancing her fluids. She remained in the hospital for 3 precarious weeks mainly due to her heart problems. Finally she was released with medication and she was pretty much back to normal. During this period of time, Andri's father, Brian, was also diagnosed with a rare muscle disease called Myofibrillar Myopathy. To date, the symptoms have been minor. Seeing a possible connection to Andri, a muscle biopsy was taken during her spine surgery and it was revealed that Andri most likely has this as well. This disease causes muscle weakness, contractures, scoliosis and cardiomyopathy. Arthrogryposis and Freeman Sheldon Syndrome now appear to be misdiagnoses.

Andri had her first lengthening surgery in February of 2005 where her heart again had trouble re-balancing her fluids. She was in the hospital for 5 days this time. A later July 2005 heart check-up revealed that her heart had now built up very dangerous levels of pulmonary pressure (pulmonary hypertension) - a sign that the heart is weakening. If unchanged, this can permanently damage the pulmonary arteries precipitating the need for a new heart and lung.

Andri was listed on the transplant list Friday, August 26th and received a new heart on December 17th. We got to the hospital at about 11AM but the actual surgery didn't start until about 2AM that night. It was a long night waiting for the results but one of the doctors periodically came in and gave us updates. The procedure went very well and according to plan. We got to see Andri sometime around 5AM. She was only in the hospital for 13 days and came home to a huge welcome party - the local TV news crews were there too!

She returned to school in April and continues to do well today with no signs of rejection or infection. We ask that you pray for our family and the other family that donated their child's heart to Andri. Please become an organ donor, cherish life, your health and your families. God bless.