Andrew Dennis Doran
On June 27,1996, we welcomed our first child into this world, Andrew Dennis Doran, Jr. Although Drew was born with low platelets and had to spend his first 9 days in the NICU, he quickly recovered and came home to a family who loved him dearly.
Drew was a happy child with a wonderful disposition. Every time you heard that little infectious laugh of his it caused others instantly to begin laughing. He was like any normal baby boy in the fact that he liked to play with toys, and with the dog, and he loved to be outside. He enjoyed life to the fullest and made us the proudest parents ever. Everywhere we went people were always commenting on how he was so beautiful and well behaved. He progressed well his first year, achieving most of his milestones around the proper time. By his first birthday, he still appeared as happy and healthy as ever, although he was often having typical chronic ear infections, along with coughing and congestion. We also began to notice that although his weight kept increasing he was losing ground in the percentile of height, dropping over time from the 75% to the 15%. In August of 1997, Drew had surgery to put ventilation tubes in his ears. The blood test prior to surgery showed him to be slightly anemic.
On September 18, 1997, we brought Drew to his pediatrician for a well baby checkup. The doctor ran another blood test to see if he was still anemic and his red blood count had dropped even lower. Additionally, he had very low white blood cells and platelets. The Doctor sent us straight to Drew’s pediatric hematologist for testing. The hematologist wanted to do a bone marrow aspiration, thinking Drew might have leukemia; we were incredibly scared. Here we were, in the course of one day, from thinking he was perfectly healthy to thinking he might have leukemia. Right before the testing the doctor examined Drew’s stomach, and immediately noticed that his spleen and liver were both enlarged. They proceeded with the aspiration although now concerned about Drew’s enlarged organs. The bone marrow aspiration confirmed that Drew did not have leukemia. We were relieved, although still almost in disbelief that anything was wrong with our son. We were very concerned over the next possible diagnosis. The doctor suspected Drew might have a disease called Gaucher Disease and wanted us to remain in the hospital overnight for tests. After ultrasounds, x-rays and more blood work we were discharged from the hospital. Two days later the doctor call with confirmation that there were Gaucher cells in Drew’s blood. We were cautiously optimistic that, with the help of enzyme replacement therapy, Drew would go on to lead a full normal life. We did our best to find out what information we could about this rare disease; while the doctor’s did genetic testing to see which of the three types of Gaucher disease Drew might have. The results of the tests came back as inconclusive – Drew had a “private mutation” that could not positively be tied to any type at this time, so further testing would have to be done.
The doctors were optimistic that enzyme replacement therapy might work for Drew and we began this in October of 1997. Drew then had to have a port surgically put into his chest so he could receive his weekly therapy. We would go to the hospital every week “to see his friends”. The doctors and nurses were wonderful with him. We would be there for hours every Thursday, and the nurses would play on the phone and giggle with him, or let him sit at the nurses’ station and play behind the desk. He grinned and smiled most of the time we were there. His coloring was getting better, and his organs although not getting any smaller did seem a little softer.
After a couple of months his blood counts finally started to rise. We were optimistic. The Genetic doctor scheduled a MRI to see the actual size of his liver and spleen. Unfortunately this did not work because Drew still had his continual cough and he could not lie still long enough for the MRI to be done, so he had a catscan. This showed we were not making much progress on shrinking the organs. In the meantime Drew started having occasional laryngeal spasms and would lose consciousness. We did not know what these were and were terrified, having to call 911 on more than one occasion. The doctors always blamed these on other things, like “breath holding” from a temper tantrum to a mucus plug from allergies. In January of 1998 Drew had his final laryngeal spasm and went into cardiac arrest and passed away.
Life will never be the same for us after having lost our angel. We have a new miracle now, our second son Jacob. He was born healthy and happy, September 19, 1998, exactly one year after his older brother had been diagnosed. We will never forget all of the wonderful times we had with Drew, and our lives will never be the same without him. Not a day will go by that we will not think about him and how things might have been. We can only thank God for the gift of Drew and the 18 months that we had the privilege of knowing Drew and being his proud parents and what a great contribution he made to our lives. His courage and spirit in the face of adversity is an inspiration to us all. He is still alive in our hearts encouraging and calling us to help other children like him. Because of this we have made a decision to support the Children’s Gaucher Research Fund to hopefully find a cure and prevent other children and families from suffering as a result of this devastating disease.
Andrew and Jenny Doran