This Is What I’m Grateful for Following My Family’s Fabry Diagnoses

Being diagnosed with Fabry disease turned my world upside down. Finding ways to cope and accept my new life, as well as that of my son, was crucial. Reminding myself of all that I still have has given me the strength to stay happy and to fight to be as healthy as possible.

Here are some of the things for which I am most thankful.

I am thankful for my beautiful daughter, who changed my life. I never really had any sort of direction before she was born, and she gave my life meaning. I am eternally appreciative that I get to be her mother and watch her now as she turns into an amazing young woman.

I immediately knew I wanted to have another child after she was born, but a failed relationship and four years would pass before it was time to welcome my son. My love and devotion to him are beyond any words I could write. I am forever grateful I get to experience this kind of love.

I have also been blessed with a wonderful extended family. My aunt and uncle who raised me after I lost my mother have pushed me to be who I am, someone I am proud to be. It was my aunt’s diagnosis that started our journey with Fabry and potentially saved our lives.

My grandmother is always there no matter what. Even now when I go to her house, I feel like I am home.

I also scored with my husband’s family. I adore all of them and am so thankful I get to watch their kids grow up. His parents are always supportive and loving. The entire family immediately accepted my daughter and me as part of their family.

I have a friend who lives in Tucson, Arizona, whom I couldn’t live without. She has three kids, and it is impossible to be unhappy and not smile when they are around. Escaping to her home with my kids and my cousin, who is almost 17 and is my children’s idol, has been a much-needed break from our reality.

I have friendships in which everyone is busy with their own lives in New York or San Francisco, so we aren’t able to talk much. But no matter how much time has passed, things are always the same with these girls. I don’t have to explain anything — they just get it.

I have a friend with the best sense of humor who can always make me laugh. She and her kids met us at the hospital once for lunch just because. Stuff like that really means a lot to me.

My husband is the best partner. He works harder than anyone I know. We are a genuine team that works together, parents together, and dreams together. He listens when I am overwhelmed or wracked with the guilt of passing Fabry to our son. I am so thankful that I get to go through life with him.

I also am thankful my son was diagnosed at 8 and we were able to get him started on treatment. Because of this, we can improve his quality of life. Having health insurance and treatment available is something I will never take for granted. I just want my family to be happy and healthy.

What are some things you are grateful for? Please share in the comments below.

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Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Fabry disease.