Precious Baby Tobias

I am creating this go fund me for my niece, a devoted mother who is currently experiencing a pain that no parent should ever know, as she recently learned that her son has a terminal illness (x-linked infantile spinal muscular atrophy) with a life expectancy of about 2 years; an assumed average that is directly related to the quality of life and care that she is able to provide him. She has recently had to quit her job to assure that he receives the quality care he needs. On a daily, hourly and at times minute to minute basis she is solely responsible for making sure that her son has the oxygen he needs to take his next breath. She is responsible for making sure that he is comfortable and happy, while fighting back the crippling sadness that comes with never knowing when goodbye will come. 

 In addition to this sweet boy, she also has a 7-year-old daughter; a doting and loving big sister who deserves to watch her brother live a loving and fulfilled life. 

This go fund me is to ensure that my niece, grand-nephew and his sister can enjoy whatever time they have together without the added worry of financial hardships; knowing that should they find a treatment in the future, require specialized medical equipment or need anything to better her son’s quality of life that she will financially be able to do so.

 With my niece’s permission I have copied her recent Facebook post to better explain her son’s diagnosis. 

 “Yesterday I learned that rare doesn’t mean impossible. I found out that my baby boy, the baby I’ve prayed for, cried for and wanted more than anything in this world has a rare genetic condition called, x-linked infantile spinal muscular atrophy (XL-SMA). There is a more common type of spinal muscular atrophy (SMA) resulting from the SMN1 gene that now has treatment. Unfortunately, the type of SMA that my son has comes from the UBA1 gene and does not have a cure or treatment. It is a fatal condition with a timeline that depends on what we do to prolong his quality of life, but children with x-linked sma typically pass away by age 2; as of now we have been told that the end result of this condition is inevitable, and that prolonging his life with quality care is the best assurance that we have for more time with him. 

 I can’t even begin to explain the suffocating feeling in my chest. There are moments when I struggle to breathe. I don’t understand how this can be happening, or how to find the strength to go through the day without thinking about the future. 

 I’m doing my best to focus on today, how perfect my sweet boy is and how lucky I am to have him, because the alternative is to live life on the outside like I feel on the inside and I can’t do that to my children.”