Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Let鈥檚 talk about losing a child. I know, not a feel-good topic, but one I鈥檓 living with right now. The reason I blog, the reason I know why I even know about my own bleeding disorder is because I had a son. I say 鈥渉ad鈥 because he died on Jan. 1, 2021. His name […]
Happy 2021 everyone! With this New Year comes a lot of hope and promises. It was a long 2020 with many life changes and stresses. I am the mother of a 28-year-old son, Michael, with severe hemophilia B and inhibitors due to allergic reactions to all factor 9 products. I know that sounds very stressful […]
隆Hola, mis queridas madres y Feliz a帽o nuevo para todas! 驴Has notado el cambio en las preferencias en alimentos en los 煤ltimos a帽os? Hoy les hablar茅 de lo beneficioso que es comer saludable.聽 De porque tener h谩bitos alimentarios saludables nos alarga la vida para disfrutar a nuestras futuras generaciones. Nuestros h谩bitos alimentarios, en gran medida, […]
隆Saludos nuevamente a todas las extraordinarias mam谩s de nuestra comunidad, un fuerte abrazo desde la distancia! Para los que no me conocen, tengo un ni帽o de 11 a帽os con hemofilia A, que se llama Iv谩n Manuel.聽Hoy les escribo, pensando en los diferentes retos que esta pandemia nos ha tra铆do a nuestras vidas. Desde los estudios […]
Hola, mis amigas de Infusing Love Moms Blog. Soy Ana, madre de un hijo con hemofilia Tipo B, deficiencia de Factor IX moderado y vivo en El Paso, Texas. Hoy quiero platicar con ustedes de el amor, el agradecimientoy el perd贸n. El amor es, quiz谩, el sentimiento mas hermoso que el ser humano pueda experimentar. […]
My son, Michael, has severe hemophilia B. He is soon to be 28 years old. Wow! That time flew by! I remember the day we found out he had hemophilia. He was 11 days old. We were shocked, scared and ready to take on this challenge life had given us.聽 We educated ourselves and our […]
Strong. Every January I reflect on the year to come. I chose a word based on something personal, either to myself or to our family. This year I chose the word: Strong. I chose that word specific to my goals for the year. I鈥檝e been a consistent runner since 2015. In fact, I love it […]
Attending HFA鈥檚 Symposium has always fascinated me. I have attended a few symposiums with my family: St. Louis, Cleveland, Las Vegas, and San Diego. During symposium, I networked with individuals who were in various fields: social workers, physicians, nurses, physical therapists, and patients.聽 Days were filled with inspirational kickoff and educational breakout sessions. There […]
We are now four or five months into this very bizarre time of the COVID-19 Pandemic. If you鈥檙e like me, 聽you鈥檙e not getting any more used to this 鈥渘ew normal鈥 but rather more than ever, ready for it to be over. While we may be ready to get back to life the way it […]
鈥淓veryone can be great because everyone can serve.鈥 鈥 MLK Jr. 鈥淪ervice to others is the rent you pay for your room here on earth.鈥 鈥 Mohammed Ali Volunteering is gift. It can be the best things you鈥檒l do 鈥 both for your community and you. For me, there are mental health benefits in getting […]
When I received Hemophilia Federation of America鈥檚 Infusing Love: A Mom鈥檚 Blog schedule back in January for this year鈥檚 blogs, I thought, 鈥淥k I have plenty of time to think and write the best blog yet for me.鈥 Wrong鈥 As the months went on, the craziness with my boys鈥 school and extracurricular activities and sports, […]
Our children face difficult things in their life on a daily basis. We teach them, we guide them and then pray it all works out. When they are little, we can control situations and speak for them when we believe we know our children better than anyone in the ER. We are the MOM! We […]
My son鈥檚 pediatric ophthalmologist tells a story about a little girl who was about 4 or 5 years old who came in for an eye appointment due to some concerns. It was determined the little girl had severe double vision. She was seeing double of almost every single object in her line of sight. The […]
I never thought this day would come鈥. When Myles was first diagnosed with hemophilia A, I knew we had a long road ahead of us. Doctor appointments and worrying about safety both inside and outside of school, could always be scary. However, the scariest was the responsibility of making sure Myles always had the correct […]
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