Showing posts with the label terminal

Doctor Asks Terminally Ill Children What Truly Matters in Life...Their Answers Are Incredibly Wise

The Guardian
"I asked some of my terminally pediatric patients what they had enjoyed in life and what gave it meaning...Kids can be so wise."
Children can often be unbelievably wise beyond their years.
Dr. Alastair McAlpine has seen negativity in the world wherever he turned. That's how he decided to tweet some of the wisdom he has learned from his terminally ill patients. These children were all between four and nine years old, but they were still able to pinpoint precisely what it is that makes life worth living for them. Their answers will surprise you.
Dr. McAlpine is a palliative care physician in Cape Town, S. Africa, who eases the pain of kids who are dying. The medicine he practices isn't intended to cure their ailments, but to make them more comfortable and joyful.
Twitter His thread about this informal survey of what truly matters (and what doesn't matter at all) in life went viral, and with good reason. These children's replies are heartbreaking but equa…

A Tribute on the PCH Warriors and Advocates Facebook Page

Hello warriors and advocates! It’s our favorite day Super Kid Saturday. Today we remember Ian a sweet boy who I wish I had the opportunity to meet. His mothers words paint an amazing picture of her incredible son and I don’t even want to alter her words at all. “Ian had PCH1A, caused by a mutation of the VRK1 gene. He was not officially diagnosed until he was 9 years old. We found out when he was 6 years old that what ever he had was going to be rare, non-treatable, progressive and terminal. Finally, getting a diagnosis was actually a relief. For me the fear of him passing away without knowing why was unbearable. Originally some doctors diagnosis, Ian as having CP...I think we ultimately knew this was not the case but it helped us to get some services for Ian. From a medical stand point, Ian's biggest challenges were respiratory. In 2013, Ian ended up in the hospital with RSV and pneumonia. He was intubated and after 3 failed attempts to extubate, he was trache and vented. This was …

Pushy Parents

Proud to be a pushy parent....maybe, just maybe...once a diagnosis is found....we can do something to help others....or maybe we will become a WISER pushy parent...
Too Rare for Research?  People with rare diseases often experience significant delays in diagnosis and access to few, if any, treatment options. Paturel, Amy M.S., M.P.H. Neurology Now: April-May 2012 - Volume 8 - Issue 2 - p. 29-33 doi: 10.1097/01.NNN.0000414217.98072.84 Features: Rare Disease
An estimated 6,000 to 7,000 rare diseases -- many of them neurological -- collectively impact nearly 25 million Americans. People with rare diseases often face greater difficulties than people with common diseases in locating experts, receiving an accurate diagnosis, and finding treatment options. Here, we explore the ways that people with rare diseases are pushing for more research and better treatments.
When Jon Soeby snipped his newborn son's umbilical cord, baby CJ grunted. Astonished, the doctor joked that CJ was already tryi…