Sunday, December 29, 2019

A Message to My Daughter


My daughter wasn't born strong, she was made strong. Every strong girl has their breaking point. Someday things will make sense. I want my daughter to believe deep in her heart she is capable of achieving anything she puts her mind to. 



To My Daughter:                                                                                                                               

                       Stay strong and be brave princess. You may have scars on your legs from the countless surgeries you have had, but you wear those scars like a warrior. I don't want you to be ashamed of your scars. Each of those tell a story of the journey and emotions you have been through. The journey you have been through has shaped you into the beautiful person you are today. You may have Blount's Disease, but Blount's Disease does not have you. I want you to inspire and influence others to do the same. I want you to share you story and help educate others who face the same challenges as you. You have a voice and a story that can give hope to others fighting Blount's disease. I know sometimes that the pain takes over you and I want you to know that there is hope. Don't allow anybody or yourself tell you otherwise that you are not enough, because you are loved.  As a mom, I am not perfect. I make mistakes. In the end, no one could ever love you the way I do. I will fight for you, I will advocate for you. I will do whatever I have to do to make sure we make it through this journey together. This world is hard and it can be filled with dark and scary things. No matter how dark it gets, the sun will rise again. I am so blessed to get to love you and be your mom.You'd be surprised who's watching your journey and being inspired by it.....don't quit. 

Be brave, have courage, and love life. 
Love you to the moon and back, 
Mom. 
#blountsdiseasestrong 

Saturday, November 30, 2019

May your Holidays be filled with Hope



Families that are affected by a rare disease face many challenges and hope for better research, more answers, and cures for the conditions they face. The holidays can be a tough time for families in the rare community. There are many families who deal with stress on an everyday basis and it can be hard to partake in the holiday cheer during the season. Some families face medical expenses through the year that make it financially hard to be able to afford gifts for their children. Some families are spending the holiday's in the hospital with their child. Some children are unable to participate in  holiday activities because they are recovering form surgery. When most families are gathering to share holiday meals and exchange presents, there are other families who are facing the unthinkable. 

 In effort to bring hope and light to the families affected by Blounts disease, I am here to remind you that you are not alone. Holidays should be a magical time for families and although we may be facing struggles and challenges, our community is stronger than ever. Take time to enjoy something about the season and most of all take time for yourself. Self care can seem like it takes too much time, but we must try to stay mentally healthy especially during the holidays when it can take up our emotional energy. Enjoy the holidays for what they are; a time to enjoy with your family. Whenever we begin to feel as if we can no longer go on, hope whispers in our ear to remind us that we are strong.. Blount's disease strong.

May your holidays be filled with hope. 

Angela U.,
 Admin, Blount's Disease Strong

Tuesday, January 15, 2019

Connecting with other Parents

         

               Everyone has a story. With that story comes a story worth telling. A story that can help a person during the most difficult moments in their lives. A story that can bring awareness and make others feel like they are not alone. Stories can help make a difference in the world. Parents of children with a rare condition often feel alone, judged, and frustrated until they meet other parents sharing a similar journey. The beginning of a new diagnosis can be a scary time for the family and your diagnosed child. You feel like enough questions aren't answered and you wish you can do anything to take the pain away. Connecting with other parents and families who are experiencing the same diagnosis can help make the journey a little less scary. Being able to talk to others with whom you can relate can help with the emotional challenges a rare disease can bring. Being part of a support group or online community can help connect you with other families who may live close or near the same area as you. A support group can help you learn about information you weren't aware of, feel more in control of the situation, and be inspired to wanting to raise more awareness.

             The internet is such a useful tool to connect with other families and receive encouragement. Sharing your personal experiences takes courage and also helps you become and advocate for your child. Blount's Disease is an ongoing experience for patients and families. A social connection can help improve our psychological well being. Having a place to come together can create a foundation for effective interactions. Blount disease is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Blount disease, or a subtype of Blount disease, affects less than 200,000 people in the US population. 

             You don't have to face this journey alone. You never know who you will connect with. Feeling less lonely, less isolated, and not being judged is a huge benefit of support groups. The best part is you can read about other experiences from the comfort of your own home in your pajamas! Happy connecting! 

-Angela U., Admin of Blount's Disease Strong 


If you or someone you know was recently diagnosed with Blount's Disease feel free to join our closed support group on Facebook at https://www.facebook.com/groups/1633747536929800/