Carla and Family’s Story

I have two boys with mastocytosis, Alex 12 years old has Systemic Mastocytosis and was diagnosed at the age of two. He has an enlarged liver and spleen and a low platelet count. By the age of three and a half he was also diagnosed with an Immune Deficiency with a sub group IgA and 

Kylie and daughter Lucia’s Story

I’m Kylie and we have three daughters, my youngest Lucia is aged 7 months. Here is a bit about Lucia’s condition. Lucia was about 4 months old when she was diagnosed with Urticaria Pigmentosa, she had the spots on her body for about 2 months beforehand but the GP had no idea what they were 

Kelly and daughter Amber’s Story

I have 2 children one with mastocytosis, the cutaneous version. She is 18 months old and was diagnosed when she was about 6/7 months. I will be requesting Epipens, although Amber hasn’t shown any anaphylactic tendency just knowing it is possible I want to be prepared, this was all news to us! Also she has