A while back we submitted a patient story about our son Noah, which can be found here. This is his update.
Like you, we were just a typical family until rare disease stopped us in our tracks and forever changed our lives. This past January, we were told that our then two year old son, Noah, would only have a year left to live as the rare infection that plagued his body would begin to shut down his organs.
How could this be? We thought.
We had done EVERYTHING the doctors had told us to do and then some. For almost a year our son endured several hospital stays, nine IV therapies a day, Interferon injections six days a week and several surgical procedures. Nothing had worked and we were now faced with a radical approach that had not been done before. A Stem Cell Transplant was now the only hope to save our son’s life.
We had no other option and moved forward. It did not take very long for our son to be matched via the Be The Match Registry. We found a 10/10 unrelated matched donor from Germany who would quickly become the saving grace we had wished for to save our precious Noah.
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 (myeloablative transplant). He lost his hair, was on a strict diet (neutropenic) and missed home desperately. On February 1st, 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 had given our family; we are forever grateful for him and hope to one day meet him to thank him in person. It was February 27th when Noah was released from the hospital; he did amazingly well throughout the whole transplant. He began to engraft before day 14, following the transplant and continues to do well. Noah is surprising us all, his doctors included.
We are home, still under some isolation rules as he has to wait till 100 days post transplant to be around people. May 12th will be his 100 day milestone, but in Noah’s case, we are told to still proceed with caution. During this time at home we travel back and forth to doctor’s appointments one to three 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.
Having a child diagnosed with a rare disease is very scary as it’s a lonely place to be. The comfort we have from our journey thus far is knowing that doctors are learning so much from Noah that he is changing the way medicine is practiced. Noah still has a long road ahead: doctors say he won’t necessarily be out of the woods until two full years out post transplant. As Noah’s new immune system “wakes up,” his underlying bacterial infection can threaten the new immune system and it will shut down and the infection will once again take over. We just don’t know what to expect, the waiting game is unbearable but we have today: he’s good today– we’ll take it!
In the meantime, we are trying to raise awareness and make a difference. So far we have partnered with other organizations, such as Mattea’s Joy, Team Nicholas, and Atia’s Lady Bug Project. Team Noah has hosted a Rare Disease Day event this past February in Chicago, raised funds for The Make-A-WIsh Foundation and are working to establish RARE Meetups in our own community along with host Bone Marrow drives. We are also partnering with the Primary Immune Deficiency Foundation to help host a walk-in this fall, and my school district is supporting Global Genes through a service learning project about rare diseases. I have also joined forces with other parent advocates by helping out on the newly established Global Genes Advocacy Leader Group. Being rare is a gift, and my mission is to become a strong voice in the rare community and make a difference in my son’s name.
Noah’s story can be followed on his facebook here: https://www.facebook.com/TeamNoahWeCareAboutRare?ref=tn_tnmn