April In The Burbs

Dot and John playing  in couch fort.  As a parent of a child with a chronic illness, it can be overwhelming to manage the daily demands of managing their care while also trying to meet the needs of your other children. It is important to remember that your other children have their own unique needs and deserve your attention and love as well. Here are a few tips for making time for your non-medically complex children while balancing the care of your child with a chronic illness: Set aside special one-on-one time: Try to carve out a few minutes each day to spend some quality time with each of your children. This can be as simple as reading a book together or playing a game. Involve your non-medically complex children in the care of their sibling: Depending on their age and maturity level, you can involve your other children in the care of their sibling with a chronic illness. This can help them feel included and can also be a great learning opportunity for them. Find support: I...

  Hi friends!!  We’re going to be holding a benefit garage sale in a couple of weeks to try and earn enough funds to get Dot to the Adrenal Insufficiency United conference in Portland, Oregon in March.  It’s important that she connects with others who have her rare disease and that we learn all we can to help her live the fullest and healthiest life she can.  If you have any items you’d like to donate to the cause, I will be happy to pick up from you or we can meet & I can grab it there.  Anything not sold will be donated to Goodwill of Central Texas.  As always, a giant Thank You to all of our friends and family who are always such a great support system for our little rare kiddo & family. ❤️🦋

  Rare Disease Day is an annual international awareness day that takes place on the last day of February. The day is dedicated to raising awareness about rare diseases and the challenges that people living with rare diseases face. According to the National Institutes of Health (NIH), a rare disease is defined as a condition that affects fewer than 200,000 people in the United States. There are more than 7,000 rare diseases, and together, they affect more than 400 million people worldwide - our amazing Dorothy being one of them. One of the main challenges that people living with rare diseases face is the lack of available treatments. Many rare diseases have no known cure and few, if any, FDA-approved treatments. This can be frustrating and devastating for patients and their families, who may feel like they have nowhere to turn. Another challenge is the difficulty in getting a diagnosis. Many rare diseases have symptoms that are similar to more common conditions, which can lead to mi...