chronic illness & rare diseases
BRACHIO-OTO-RENAL (MELNICK-FRASER) SYNDROME
- Sneak Peak: A glimpse into the life of raising a child clinically diagnosed with Branchio-Oto-Renal (Melnick-Fraser) syndrome, which includes living with Hemifacial Microsomia, Microtia & Hearing Impairment, Dysphagia, Chronic Lung Disease, and Obstructive Sleep Apnea
CEREBRAL PALSY
- Healthy, Unwealthy & Becoming Wise: A blog with ‘a light-hearted (sometimes inevitably heavy-hearted) insight into the life of a pre-medical student who has a little bit of an extra challenge’.
FIBROUS DYSPLASIA
- Calhoun Bone Pain Project: A blog by super-mom Cat Calhoun, about her family and particularly Billy, age 8, who has a bone disease called fibrous dysplasia that causes pain and progressive disability (he uses a walker and wheelchair).
GOLDENHAR SYNDROME
- Life Since Harlie: A blog chronicling the journey of a family who was blessed with a very special child given only a 5% chance of living to the present.. ‘life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible’.
HEREDITARY SENSORY AUTONOMIC NEUROPATHY
- Different But Determined: A blog about what this family thought life was like Hereditary Sensory Autonomic Neuropathy but are not sure anymore.
HYDRANENCEPHALY
- Small Portion of a Life’s Journey: A blog written to reach out to others living the same journey or similar life experiences
LUPUS
- CHRONICLYsILLy: Kim Possible uses her blog to spread a positive attitude and outlook towards life, and to show people that you can still live a happy and fulfilling life, maybe not despite lupus, but rather, because of it.
MCCUNE-ALBRIGHT SYNDROME
- Lauren Our Brave Little Hero: A chronicle of our family’s life and battle with McCune-Albright Syndrome
PRIMARY IMMUNODEFICIENCY
- See Look through our eyes in the parenting section below
RRP
- MurphyBoys.org: Written by the single mother of a child with aggressive JORRP (juvenile-onset recurrent respiratory papillomatosis).Blogs written by families
- Running for Ayrie: Running For Ayrie is maintained by friends of Nora Murphy, Tombolo’s executive director, and has mission is to raise $8,000 for Ayrie (Nora’s son) and his travel fund
parenting chronically ill children with a chronic illness
- Grateful Mama: A blog by a mom of 2 dealing with the curveballs life has thrown her family. Her son is in kindergarten and her daughter, in preschool, was born with a host of medical problems (see here for a complete listing) and is now thriving. Her husband was diagnosed with Young-Onset Parkinson’s Disease at the age of 34. Like many of the blogs on here, the author conveys that while is challenging, it is also good!
- Look through our eyes: a blog by a mother of children with primary immunodeficiency, and her story of living with a disease that is a part of their life but does not define them.
- Tilling Mama: The journey of one chronically ill mom, navigating life with 2 chronically ill kids. She blogs to find hope, resources and support as best she can.
advocacy
- Be the Change: Rooted in service to patients and families vulnerable because of illness and disease. It is born out of the suffering of many, especially the author’s son Michael who inspired her to Be the Change.
health care and policy
- Rare Disease Support: Written for and my members of the rare disease community.
