Rare Diseases SAAug 13, 20193 minMy Fireman’s journey with Fanconi Anemia from birth. By Gidion’s momMy son Gidion was diagnosed with #FanconiAnemia (#FA) at birth, a very rare genetic disorder causing fatal bone marrow failure. He came...
Rare Diseases SAAug 13, 20193 minDaily life is a struggle but we couldn’t imagine not having Connor in our lives. #Dravet SyndromeOn the 21st of January 2011, our beautiful little boy Connor was born. He was perfect in every way and had no issues what so ever. Connor...
Rare Diseases SAJul 28, 20194 minWhat NOT to say to a grieving mother… Words by Tuschka ReyndersI thought long and hard before I posted this, since I don’t want to offend anyone. I know in my heart everything said to me is said with...
Rare Diseases SAMay 17, 20192 minBeautiful “Shanaya the First” gains her angel wings.Little Shanaya Govender, or Shanaya the First as she affectionately called herself due to her love for Sophia the First and all things...
