Sanfilippo/MPS -- End of Life, Hospice: How long is this going to take?
"How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle."
The mother of a 13-year old with Sanfilippo speaks candidly about the last few weeks of her daughter’s life, how challenging it was to find the balance between pain management and alertness, accepting that she was dying, bringing on hospice, wondering how long this period would last, being there at the very end, and then the hour or so after. That is an experience a parent should NOT have to live through.
https://youtu.be/gfpMh8fePgw
If your child has Sanfilippo or another pediatric life threatening illness, this mom shares her perspective which may help you find your way. Visit www.courageousparentsnetwork.org for more videos.
Видео Sanfilippo/MPS -- End of Life, Hospice: How long is this going to take? канала Courageous Parents Network
The mother of a 13-year old with Sanfilippo speaks candidly about the last few weeks of her daughter’s life, how challenging it was to find the balance between pain management and alertness, accepting that she was dying, bringing on hospice, wondering how long this period would last, being there at the very end, and then the hour or so after. That is an experience a parent should NOT have to live through.
https://youtu.be/gfpMh8fePgw
If your child has Sanfilippo or another pediatric life threatening illness, this mom shares her perspective which may help you find your way. Visit www.courageousparentsnetwork.org for more videos.
Видео Sanfilippo/MPS -- End of Life, Hospice: How long is this going to take? канала Courageous Parents Network
Показать
Комментарии отсутствуют
Информация о видео
Другие видео канала
SanFilippo Syndryome/How palliative care can be there for you at end of life.Childhood Dementia: the heartbreak and the hope | Megan Donnel | TEDxYouth@MoriahCollegeThis Young Man Is One Of Two People In The World Coping With A Rare, Nameless Disease | NBC NewsHow Tourette's Syndrome Impacts My Life | Minutes With | UNILAD | @LADbible TVLiving with Sanfilippo Syndrome: Reagan's StoryPediatric life limiting illness/Parents share their son's last hour of life and saying goodbye.Clinical Trials: Two Children Screened; One Qualifies, Antibodies Exclude the OtherA parent's impossible choice: saving siblings with rare Sanfilippo syndrome | 60 Minutes AustraliaBremerton mom seeks to raise awareness about her son's rare terminal illnessLaurel Hospice | A family's story of palliative care.What is hospice care? What you need to know about hospice5 Things You Should Know When Someone is Actively DyingVIDEO: Parents of girl with Sanfilippo syndrome improve some symptoms with CBD oilSanfilippo/MPS: We hoped she would live to see a cure for her disease.How to Have an End of Life DiscussionCure Sanfilippo - World Symposium 2021Sanfilippo syndrome/Involving siblings in the care of the critically ill child.Sanfilippo's syndrome is complicated, helping is easySanfilippo/MPS: The road to diagnosis.The families dealing with Batten Disease | SBS The Feed