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After a long and bumpy road to pregnancy, including multiple rounds of IVF and multiple egg donors, Daniel and Christina Kettler were thrilled to finally welcome their son, Fitz Robert Kettler, into the world at 2:19 pm on Friday, June 21.
Unfortunately, only a few days after Fitz was born, he was diagnosed with a severe and very rare genetic condition called Artemis Severe Combined Immunodeficiency, also known as ART-SCID. ART-SCID affects Fitz’s immune system, and the mutations in his DCLRE1C gene prevent his little body from making T and B lymphocytes, which Fitz needs to survive. During pregnancy, Christina's body did an excellent job of passing anti-bodies on to Fitz to provide him with some protection after he was born, but moving forward Fitz will need the ability to produce these lymphocytes, the white blood cells formed in the bone marrow, to fight infections on his own and to have a normal, happy, healthy life. Until Fitz has a functioning immune system, he will need to be in quarantine, along with Christina and Daniel, who have all been in a level of quarantine for the past several weeks already.
Fitz requires early and prompt treatment, and because his case is so rare (one of the genetic mutations exhibited in Fitz has never been seen before), the standard intervention of a bone marrow transplant is not the best option for him. In a stroke of positive luck, a clinical trial for ART-SCID is being held at UCSF, which Fitz was recently accepted in to. The clinical trial will include gene therapy with the goal to help restore his immune system. Fitz will be 7th in line at the 4-5 month clinical trial to receive gene therapy. The whole family will need to relocate to San Francisco for several months during the trial. While gene therapy has shown promising and positive results, the potential for a bone marrow transplant needs to run concurrent to the gene therapy.
Daniel, Christina, and baby Fitz have a long and challenging road ahead with several possible scenarios on the path to recovery. It is unknown how long it may take for Fitz to respond to gene therapy or a bone marrow transplant. A relocation to San Francisco will be costly for their family of three, not to mention the fact that they will have to be quarantined. This presents a unique set of challenges, such as the family’s ability to work.
We have all heard the term, "it takes a village to raise a child." Well, this generous and loving family need their village! Donations will go forth to helping Daniel and Christina with the temporary relocation and housing expenses they will incur to relocate Fitz to the UCSF clinical trial. Donations will also go forth to aiding in medical expenses and helping the family with the lost income of either decreased or lost work.
Fitz needs an immune system! - and we want to do everything we can to ensure his wonderful parents can do everything possible to make this happen without any limitations. Your consideration and generosity are deeply appreciated.
ART-SCID is complicated, and to further understand why Fitz's condition is so rare and serious, we encourage you to learn more about it here .
Unfortunately, only a few days after Fitz was born, he was diagnosed with a severe and very rare genetic condition called Artemis Severe Combined Immunodeficiency, also known as ART-SCID. ART-SCID affects Fitz’s immune system, and the mutations in his DCLRE1C gene prevent his little body from making T and B lymphocytes, which Fitz needs to survive. During pregnancy, Christina's body did an excellent job of passing anti-bodies on to Fitz to provide him with some protection after he was born, but moving forward Fitz will need the ability to produce these lymphocytes, the white blood cells formed in the bone marrow, to fight infections on his own and to have a normal, happy, healthy life. Until Fitz has a functioning immune system, he will need to be in quarantine, along with Christina and Daniel, who have all been in a level of quarantine for the past several weeks already.
Fitz requires early and prompt treatment, and because his case is so rare (one of the genetic mutations exhibited in Fitz has never been seen before), the standard intervention of a bone marrow transplant is not the best option for him. In a stroke of positive luck, a clinical trial for ART-SCID is being held at UCSF, which Fitz was recently accepted in to. The clinical trial will include gene therapy with the goal to help restore his immune system. Fitz will be 7th in line at the 4-5 month clinical trial to receive gene therapy. The whole family will need to relocate to San Francisco for several months during the trial. While gene therapy has shown promising and positive results, the potential for a bone marrow transplant needs to run concurrent to the gene therapy.
Daniel, Christina, and baby Fitz have a long and challenging road ahead with several possible scenarios on the path to recovery. It is unknown how long it may take for Fitz to respond to gene therapy or a bone marrow transplant. A relocation to San Francisco will be costly for their family of three, not to mention the fact that they will have to be quarantined. This presents a unique set of challenges, such as the family’s ability to work.
We have all heard the term, "it takes a village to raise a child." Well, this generous and loving family need their village! Donations will go forth to helping Daniel and Christina with the temporary relocation and housing expenses they will incur to relocate Fitz to the UCSF clinical trial. Donations will also go forth to aiding in medical expenses and helping the family with the lost income of either decreased or lost work.
Fitz needs an immune system! - and we want to do everything we can to ensure his wonderful parents can do everything possible to make this happen without any limitations. Your consideration and generosity are deeply appreciated.
ART-SCID is complicated, and to further understand why Fitz's condition is so rare and serious, we encourage you to learn more about it here .