Gavin’s SIFD Journey

Hi. Our story begins back in December 2021 when our son Gavin was born. He has struggled from birth and unfortunately we have been in and out of the hospital ever since. He was recently diagnosed with a very rare genetic condition which to date only 58 cases have been reported world wide. It is called SIFD TRNT1 gene deficiency ( sidroblastic anemia Immunodeficiency Fever Devopmental delay) The case studies are frightening as most of the children do not live past childhood age because of complications from this progressive disease. It attacks the nervous / immune system / eyes and brain function. He is currently on and fed by a feeding tube and we are waiting for approvals for feeding, physical and occupational therapy. We need your help. I want to make this go national with not only bringing awareness to the disease but to hopefully connect with the other families going through the same thing. If you can’t donate it’s okay. Part of why I made this was for the publicity. If you have or know additional information or resources that would be so appreciated. I have reached out to my local news station to try and get a story on Gavin. There are so many unknowns to this disease. I do not want my son to die. We live in such a small state (Oklahoma) getting the word out and networking could really be life saving for Gavin. These funds would be used to help with the intense therapy, medical equipment, medical expenses, out of state traveling to specialty facilities, and help off set time off work Grant will need to take. Please consider helping in any way you can.

Thank you ❤️