Hi, we are the Galloy family. My name is Jenn, my husband Ryan and I have been married for 12 years and have two amazing boys, Brayden (11) and Noah (3). We were just a typical family until rare disease stopped us in our tracks and forever changed our lives.
Since Noah was born he was continuously sick with different viral infections and suffered many ear infections. He would always need several rounds of antibiotics to get better. In January of 2012, our pediatrician suggested Noah have his tonsils and adenoids removed and had tubes put in both ears as well because of the constant ear infections he would have. At this point Noah's lymph nodes on both sides of his neck were pronounced but we were assured they were fluid packed due to his ear infections and would go down. A month later the nodes were getting larger. We had several appointments with his pediatricians who began to get concerned after Noah did not respond to three different antibiotics to help the issue. Mid February, Noah was sent for blood work as his pediatricians wanted to rule out leukemia. On Noah's 2nd birthday, February 16th he was sent for more blood work as leukemia was still not ruled out, we were told to meet with hematology/oncology
the very next morning. Docs were thinking lymphoma and sent us home to try and celebrate his birthday before a surgical biopsy that following Monday. The initial biopsy results led docs in the direction of looking into ALPS (autoimmune lymphoproliferative syndrome). At this point HIV, lymphoma and leukemia were still not 100% ruled out so his results were sent out to Mayo Clinic. All results came back negative so we were sent to see an immunologist due to the amount of nodes in Noah's chest and surrounding his left lung. His lung at this point was collapsed on the far left side from the pressure of the nodes. This doc suspected an immune deficiency from the beginning and also referred us to an infectious disease doctor. A few weeks later it was confirmed Noah had a rare bacterial infection known as atypical mycobacteria avium complex with severe lymphadenopathy. This infection is so rare that Noah is only 1 of 8 in the world and the only one confirmed
in the US. Our ID doc put him on three different anti microbial antibiotics while we waited for his immune deficiency results, which were sent out to NIH in Maryland. 10 weeks later we found out Noah had a complete lL-12 deficiency, which means he is unable to produce gamma interferon to protect against certain life-threatening bacteria. Noah is 1 of 3 patients with this, because of Noah's diagnosis, we found out that our older son is number 2. During the ten grueling weeks we waited for results, Noah lost a significant amount of weight and became resistant to one of the meds, so he had a picc line put in and began home healthcare for intravenous meds along with additional oral antibiotics. Noah was not getting any better, his nodes on his neck increased in size and his breathing got worse. We did not feel Noah was getting the proper care at the hospital we were at so we decided to seek out a second opinion which took us to Comer Children's Hospital.
Docs there confirmed Noah's deficiency and bacterial infection but instantly knew he needed Interferon injections to jump start his immune system to help fight the bacterial infection. Immediately following our switch to this hospital, which we are forever grateful for, Noah had a g-button placed for nutrition and for oral antibiotics as his g-track is unable to absorb the medication. Docs began aggressive therapy to try and get his immune system to respond to fight this infection, which had taken over and spread in his neck, chest and abdomen. At this point, Noah was now on ten different antibiotics a day. He received injections six days a week and was still not showing any improvement. He had several internal issues so on December 13th he had stents placed in his airway and main artery (a first of its kind procedure) to try and help these issues before his stem cell transplant, which was to take place right after the new year. In January we were told
that without a stem cell transplant, another first of its kind for what Noah has, that he would not survive another year. This is news no parent should ever have to hear. We knew we had no other option; however, Noah was still only given a 50% chance of surviving the transplant as the infection was still too uncontrolled within his body.
On January 21, 2013 Noah entered the hospital for a six week stay in isolation. He was given high dose chemotherapy for a week prior to the transplant to wipe out his immune system to prepare for the new cells. He lost his hair, was on a strict diet and missed home desperately. On February 1, Noah received the cells of a 59 year old man from Germany who was a perfect 10/10 match for him. What a wonderful gift this man has given our family, we are forever grateful for him and hope to one day meet him to thank him in person. It was February 27 when Noah was released, he did amazingly well throughout the whole transplant. He began to engraft before day 14 following the transplant and continues to do well.
We are home, still under some isolation as he has to wait till 100 days post transplant to be around people. During this time we travel back and forth to doctors appointments 1-3 times per week. He has had some issues with his skin and was hospitalized once for a two day stay for a viral infection, Enterovirus, but is holding his own.
We are so very proud of him! For now we just take it day to day, he has 26 more days to go until his 100 day mark. Noah has a long journey ahead of him but we are optimistic that he will be "cured".
Being a "RARE" family is scary. That's an understatement actually! We feel alone, uncertain, and angry at times. Why our son? Why our family? There are no answers for this but I do know that Noah is changing how medicine is practiced. Our team of doctors and others around the world are learning so much from him. Several doctors are publishing articles about their care for him and how their non typical treatment for him is working.
We have teamed up with several organizations and want to make a difference in the rare community. We want to establish rare meet ups for families like ours, to fundraise for organizations such as Global Genes Network, support Be the Match Registry by hosting donor drives, help organize a walk/run for the primary immune deficiency foundation, and help our other charities in Noah's name. We have already established Team Noah and have amazing supporters behind us, our next goal is to become a 501C Charitable Organization.
Since Noah was born he was continuously sick with different viral infections and suffered many ear infections. He would always need several rounds of antibiotics to get better. In January of 2012, our pediatrician suggested Noah have his tonsils and adenoids removed and had tubes put in both ears as well because of the constant ear infections he would have. At this point Noah's lymph nodes on both sides of his neck were pronounced but we were assured they were fluid packed due to his ear infections and would go down. A month later the nodes were getting larger. We had several appointments with his pediatricians who began to get concerned after Noah did not respond to three different antibiotics to help the issue. Mid February, Noah was sent for blood work as his pediatricians wanted to rule out leukemia. On Noah's 2nd birthday, February 16th he was sent for more blood work as leukemia was still not ruled out, we were told to meet with hematology/oncology
the very next morning. Docs were thinking lymphoma and sent us home to try and celebrate his birthday before a surgical biopsy that following Monday. The initial biopsy results led docs in the direction of looking into ALPS (autoimmune lymphoproliferative syndrome). At this point HIV, lymphoma and leukemia were still not 100% ruled out so his results were sent out to Mayo Clinic. All results came back negative so we were sent to see an immunologist due to the amount of nodes in Noah's chest and surrounding his left lung. His lung at this point was collapsed on the far left side from the pressure of the nodes. This doc suspected an immune deficiency from the beginning and also referred us to an infectious disease doctor. A few weeks later it was confirmed Noah had a rare bacterial infection known as atypical mycobacteria avium complex with severe lymphadenopathy. This infection is so rare that Noah is only 1 of 8 in the world and the only one confirmed
in the US. Our ID doc put him on three different anti microbial antibiotics while we waited for his immune deficiency results, which were sent out to NIH in Maryland. 10 weeks later we found out Noah had a complete lL-12 deficiency, which means he is unable to produce gamma interferon to protect against certain life-threatening bacteria. Noah is 1 of 3 patients with this, because of Noah's diagnosis, we found out that our older son is number 2. During the ten grueling weeks we waited for results, Noah lost a significant amount of weight and became resistant to one of the meds, so he had a picc line put in and began home healthcare for intravenous meds along with additional oral antibiotics. Noah was not getting any better, his nodes on his neck increased in size and his breathing got worse. We did not feel Noah was getting the proper care at the hospital we were at so we decided to seek out a second opinion which took us to Comer Children's Hospital.
Docs there confirmed Noah's deficiency and bacterial infection but instantly knew he needed Interferon injections to jump start his immune system to help fight the bacterial infection. Immediately following our switch to this hospital, which we are forever grateful for, Noah had a g-button placed for nutrition and for oral antibiotics as his g-track is unable to absorb the medication. Docs began aggressive therapy to try and get his immune system to respond to fight this infection, which had taken over and spread in his neck, chest and abdomen. At this point, Noah was now on ten different antibiotics a day. He received injections six days a week and was still not showing any improvement. He had several internal issues so on December 13th he had stents placed in his airway and main artery (a first of its kind procedure) to try and help these issues before his stem cell transplant, which was to take place right after the new year. In January we were told
that without a stem cell transplant, another first of its kind for what Noah has, that he would not survive another year. This is news no parent should ever have to hear. We knew we had no other option; however, Noah was still only given a 50% chance of surviving the transplant as the infection was still too uncontrolled within his body.
On January 21, 2013 Noah entered the hospital for a six week stay in isolation. He was given high dose chemotherapy for a week prior to the transplant to wipe out his immune system to prepare for the new cells. He lost his hair, was on a strict diet and missed home desperately. On February 1, Noah received the cells of a 59 year old man from Germany who was a perfect 10/10 match for him. What a wonderful gift this man has given our family, we are forever grateful for him and hope to one day meet him to thank him in person. It was February 27 when Noah was released, he did amazingly well throughout the whole transplant. He began to engraft before day 14 following the transplant and continues to do well.
We are home, still under some isolation as he has to wait till 100 days post transplant to be around people. During this time we travel back and forth to doctors appointments 1-3 times per week. He has had some issues with his skin and was hospitalized once for a two day stay for a viral infection, Enterovirus, but is holding his own.
We are so very proud of him! For now we just take it day to day, he has 26 more days to go until his 100 day mark. Noah has a long journey ahead of him but we are optimistic that he will be "cured".
Being a "RARE" family is scary. That's an understatement actually! We feel alone, uncertain, and angry at times. Why our son? Why our family? There are no answers for this but I do know that Noah is changing how medicine is practiced. Our team of doctors and others around the world are learning so much from him. Several doctors are publishing articles about their care for him and how their non typical treatment for him is working.
We have teamed up with several organizations and want to make a difference in the rare community. We want to establish rare meet ups for families like ours, to fundraise for organizations such as Global Genes Network, support Be the Match Registry by hosting donor drives, help organize a walk/run for the primary immune deficiency foundation, and help our other charities in Noah's name. We have already established Team Noah and have amazing supporters behind us, our next goal is to become a 501C Charitable Organization.