Since we last caught up with Evan and DeDe, Evan's become a big brother! He is SO doting on baby Vince - the photos of them make my heart melt. Beautiful. I love seeing the progress Evan is making, and also reading DeDe's perceptions of parenting a child with a disability. … [Read more...]
Ichthyosis Awareness Month – Julius’ story – “Believe that miracles happens when you least expect it.”
Here is Julius' story, a baby born with Harlequin Ichthyosis in the town of Parang, in the province of Maguindanao, in the Philippines. The family traveled to a bigger hospital in the region to get some answers about the condition of their little boy just after he was born, but … [Read more...]
Ichthyosis Awareness Month – RJ’s story: “RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well.”
Mother of five, Valerie, shares the story of her 4 year old son RJ. Fiercely protective of her little boys’ happy spirit, Valerie details the effect of daily public ignorance on her family. Valerie also explains how her and her husband had to search for their own diagnostic … [Read more...]
Ichthyosis Awareness Month -Callie’s Story: “My skin is on me…I am not my skin”.
Callie grew up in a small town in Canada. A blessing in disguise, as she was born with Lamellar Ichthyosis. Everyone knew who she was, there were never any questions regarding her skin. Now a university student, she has ventured out to bigger cities and has to answer the endless … [Read more...]
Ichthyosis Awareness Month: Anna and Genevieve’s story: “But most days are our silver linings.”
Anna is such an amazing mother - I really admire the way she discusses issues about Ichthyosis. She has told me of the judgment she has received about her daughter's skin because people just don't understand Ichthyosis. We've become great friends online. Her daughter … [Read more...]
- « Previous Page
- 1
- 2
- 3
- 4
- 5
- …
- 10
- Next Page »