Perhaps it is because parents often feel dissatisfied with the results they receive for their children through traditional medicine that they sometimes look elsewhere for treatments to improve the conditions…
For a child without a rare disease, a mother is a lot of things: chef, financial adviser, maid etc. All moms deserve kudos for their hard work. Raising a child…
"There will be times when you feel like you've failed, but in the eyes, heart, and mind of your child you are supermom." -Stephanie Precourt Even when you feel like…
As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…
My journey with my 24 yr old daughter's illness began about two years ago. She was living away from home when her symptoms began. She wasn't able to continue to…
When my daughter was born on August 8, 2012 I became a rare mom. I wouldn't know I was until 15 months later, but my little girl was born with a…
When you’re a rare mom your diagnosis isn’t always figured out and so in between trying to raise your children, you’re going to doctors and medical centers and trying to…
I am a rare mom. For those that don’t know what that means, rare moms are the silent heroes of the world parenting to the best of their abilities with…
I am the mom to a 12 year old with Albrights Hereditary Osteodystrophy, AHO. According to the Genetic and Rare Disease Center, GARD, AHO is a rare metabolic syndrome created…
So you just found out that you’re a rare disease girl, and by the way, you’re a rare mom too! So welcome to the smallest and hardest sorority to ever…
above image by Sandro Georgi Photography In honor of Mother's Day, Patient Worthy is featuring some of the Rare Moms in the community, those caring for children with a rare disease…
God blessed my husband and me with two girls, seven and nine. They are my reasons for living and my reason for fighting cervical dystonia every day. My oldest has…
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