Baden’s Story continued …

As it turned out, this cough was the first of many infections. By the age of four months Baden was on his sixth major infection and hospitalization. His most recent infection had forced the doctors in our community to send him to the local children’s hospital. When he arrived, there was a whirlwind of tests trying to figure out what infection he had. After a full day of tests he was diagnosed with PCP (pneumocystis carinii pneumonia). The doctors told us that PCP only affects those with severely compromised immune systems, and by getting this illness Baden was showing them how serious his illness was. They told us that his immune system problem was severe and, like a “bubble boy”, he would have to be put into reverse isolation to protect him from infection. As he was moved to the reverse isolation unit, a search began to find new bone marrow to cure Baden.

By the time Baden was admitted to the hospital for his bone marrow transplant we had known for about a month that he had Wiskott Aldrich Syndrome, a form of Primary Immunodeficiency. Wiskott Aldrich Syndrome is a very rare genetic illness that passes from mother to son. It affects 1 male child in every 4 million. It causes recurring infections, low platelets (tendency to bleed), and exema. Baden’s problems with infections made it apparent early on that he did not have a typical case of Wiskott Aldrich Syndrome. By the time Baden got PCP he had not had issues with his platelets and excema, but he had experienced a significant number of infections. Unfortunately though, within a month of Baden being admitted to reverse isolation his platelet issues became significant. He received many blood transfusions. In all, he had over 200 blood transfusions with a majority of those being received in the eight week period during his transplant. His transplant was a very difficult time, and Baden spent five days on a machine to help him breathe because he was not able to do it on his own.

A few weeks after his transplant, Baden started showing signs of improvement. Everyday as we went to the hospital we anxiously waited for test results to show signs that the bone marrow transplant had worked. About three months after his transplant Baden was discharged and we were allowed to touch him for the first time in six months without wearing gowns, gloves, boots, and hats. It was a fantastic day. After discharge Baden continued going to the hospital weekly for over a year. In the first three years, he had some setbacks with issues that occurred because of his transplant. Today, Baden is a thriving young boy. He started school in 2007 and unless you knew the difficulties he has faced, you would never know the difficult road he has travelled.

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