Tue, 14 Apr 2026 10:51:15 -0400 https://whatsitreallylike.buzzsprout.com en-gb © 2026 What's It Really Like? yes 75b6ea92-65e5-5286-ad07-7c4044971fb8 Sharon episodic false In this series of podcasts, we explore the lives of children who are life-limited or have complex medical needs. We wish for vulnerable children and their families to feel heard. We hope that it will have a global reach. It is where people will chat with me, Sharon Thompson. The purpose is to comfort those who need it and to educate and connect our community with medical professionals and organisations who need to hear What’s It Really Like to Care for An Extra Special Child. 

]]> Buzzsprout (https://www.buzzsprout.com) special, complex, medical, needs, palliative care, paediatric, children, illness, rare disease, Ireland Sharon https://storage.buzzsprout.com/v9wm271g76fjbfn8tdxukwmchpxd?.jpg Delve into some of Series One Sharon Buzzsprout-10611697 Sat, 28 May 2022 11:00:00 +0100 591 full false Episode 10 Karen for All Ireland Institute for Hospice & Palliative Care In this last episode of the current series, Karen Charnley, Director of AIIHPC talks about their work supporting collaboration within the palliative care community.  Elements to listen out for are; the information website called The Palliative Hub (https://childrenspalliativehub.com/) the CPCSAG committee which was set up to advise and assist the HSE in the development of children’s palliative care in line with national policy, Palliative Care Week in September & the All Ireland Children's Palliative Care Conference coming up in November! 

]]> In this last episode of the current series, Karen Charnley, Director of AIIHPC talks about their work supporting collaboration within the palliative care community.  Elements to listen out for are; the information website called The Palliative Hub (https://childrenspalliativehub.com/) the CPCSAG committee which was set up to advise and assist the HSE in the development of children’s palliative care in line with national policy, Palliative Care Week in September & the All Ireland Children's Palliative Care Conference coming up in November! 

]]> Sharon Buzzsprout-10651795 Sun, 22 May 2022 12:00:00 +0100 1090 full false Episode 9 Anne-Marie for LauraLynn Anne-Marie Carroll Director of Nursing for LauraLynn (Ireland's only Children's Hospice) explains how they provide specialist hospice, palliative, and supportive care services to meet the needs of children with life-limiting conditions and their families. The LauraLynn Model of Care describes support within five pillars of children’s hospice care: Direct Care, Family Support, Symptom Management, End-of-Life Care, and Bereavement Support. The aim of their Model of Care is to ensure that the right child, receives the right care, at the right time, in the right place, from the right team.

]]> Anne-Marie Carroll Director of Nursing for LauraLynn (Ireland's only Children's Hospice) explains how they provide specialist hospice, palliative, and supportive care services to meet the needs of children with life-limiting conditions and their families. The LauraLynn Model of Care describes support within five pillars of children’s hospice care: Direct Care, Family Support, Symptom Management, End-of-Life Care, and Bereavement Support. The aim of their Model of Care is to ensure that the right child, receives the right care, at the right time, in the right place, from the right team.

]]> Sharon Buzzsprout-10611407 Wed, 18 May 2022 10:00:00 +0100 1925 full false Episode 8 Carmel for The Jack & Jill Foundation An in-depth chat with the CEO of Jack & Jill Foundation, Carmel Doyle.  Jack & Jill is a nationwide Irish charity providing in-home nursing care and respite support for children up to the age of 6 with severe to profound neurodevelopmental delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. Another key part of their service is end-of-life care for all children up to the age of 6, irrespective of diagnosis.

]]> An in-depth chat with the CEO of Jack & Jill Foundation, Carmel Doyle.  Jack & Jill is a nationwide Irish charity providing in-home nursing care and respite support for children up to the age of 6 with severe to profound neurodevelopmental delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. Another key part of their service is end-of-life care for all children up to the age of 6, irrespective of diagnosis.

]]> Sharon Buzzsprout-10598804 Sun, 15 May 2022 12:00:00 +0100 1661 full false Episode 7 Lizzie from Together For Short Lives We hear how Together For Short Lives supports children with complex medical needs in the UK. Thank you, Lizzie Chambers. 

]]> We hear how Together For Short Lives supports children with complex medical needs in the UK. Thank you, Lizzie Chambers. 

]]> Sharon Buzzsprout-10430742 Sun, 08 May 2022 13:00:00 +0100 1923 1 7 full false Episode 6 with Nurse Irene Listen to Episode 6 to learn what it is really like to be an Irish home-care nurse for a child with complex medical needs.  Thank you to Irene for sharing her passion for this special work. 

Also thanks to;
Amanda Evans for the graphic 
Pixaby for the music

]]> Listen to Episode 6 to learn what it is really like to be an Irish home-care nurse for a child with complex medical needs.  Thank you to Irene for sharing her passion for this special work. 

Also thanks to;
Amanda Evans for the graphic 
Pixaby for the music

]]> Sharon Buzzsprout-10416612 Sun, 24 Apr 2022 12:00:00 +0100 1909 full false Episode 5 Maggie & Alex In this episode, we hear from Maggie who tells us What It's Really Like for her son Alex who has several life-limiting conditions and is part of a large, lucky family.  

]]> In this episode, we hear from Maggie who tells us What It's Really Like for her son Alex who has several life-limiting conditions and is part of a large, lucky family.  

]]> Sharon Buzzsprout-10389029 Sun, 17 Apr 2022 09:00:00 +0100 1870 1 5 full false Episode 4 Niamh & Eabha This week Niamh Shine talks about caring for Eabha (and her three siblings) in a busy, happy family.  

]]> This week Niamh Shine talks about caring for Eabha (and her three siblings) in a busy, happy family.  

]]> Sharon Buzzsprout-10345785 Sun, 10 Apr 2022 08:00:00 +0100 2336 full false Episode 3 Sharon Dempsey for Owen *Warning *This Episode includes discussions about death in childhood.  Writer, Sharon Dempsey, talks about her son, Owen, who was diagnosed with an ependymoma brain tumour at the age of two. Owen had neurosurgery, chemotherapy, and radiotherapy but subsequently died when he was six.  Sharon recounts the diagnosis period and how caring for Owen led her to write “Extreme Parenting: Parenting your Chronically ill Child” following Owen’s death.

With great thanks & appreciation to; 
Sharon Dempsey 
Amanda Evan for graphics
Pixaby for Music

]]> *Warning *This Episode includes discussions about death in childhood.  Writer, Sharon Dempsey, talks about her son, Owen, who was diagnosed with an ependymoma brain tumour at the age of two. Owen had neurosurgery, chemotherapy, and radiotherapy but subsequently died when he was six.  Sharon recounts the diagnosis period and how caring for Owen led her to write “Extreme Parenting: Parenting your Chronically ill Child” following Owen’s death.

With great thanks & appreciation to; 
Sharon Dempsey 
Amanda Evan for graphics
Pixaby for Music

]]> Buzzsprout-10353595 Sun, 03 Apr 2022 08:00:00 +0100 2068 1 3 full false Episode 2 Sam & Isabella In Episode Two we hear from Isabella's mother, Sam.  We chat about Isabella's condition, Aicardi syndrome, and what it is like to care for her over the last eleven years and into the future. 

With thanks to; 
Samantha Hogan-Villena 
Amanda Evans for graphics
Pixaby Codi-Media for the music 

]]> In Episode Two we hear from Isabella's mother, Sam.  We chat about Isabella's condition, Aicardi syndrome, and what it is like to care for her over the last eleven years and into the future. 

With thanks to; 
Samantha Hogan-Villena 
Amanda Evans for graphics
Pixaby Codi-Media for the music 

]]> Sharon Buzzsprout-10312377 Fri, 25 Mar 2022 10:00:00 +0000 1978 2 full false Episode 1 with Aisling & Jack We hear from Aisling who is the sole, full-time carer for her sixteen-year-old son, Jack, in their home in Ireland. Jack has Down syndrome, a very rare autoinflammatory disease & other complex needs. Aisling shares her thoughts, fears, and hopes for their family.  The Covid pandemic is foremost in her mind, and she explains what it is really like to care for Jack.  On World Down Syndrome Day it is magical that we have this podcast to share.  

With thanks to; 
Aisling McNifficent our guest 
Amanda Evans for the graphics
Pixaby Coma-Media for the music 

]]> We hear from Aisling who is the sole, full-time carer for her sixteen-year-old son, Jack, in their home in Ireland. Jack has Down syndrome, a very rare autoinflammatory disease & other complex needs. Aisling shares her thoughts, fears, and hopes for their family.  The Covid pandemic is foremost in her mind, and she explains what it is really like to care for Jack.  On World Down Syndrome Day it is magical that we have this podcast to share.  

With thanks to; 
Aisling McNifficent our guest 
Amanda Evans for the graphics
Pixaby Coma-Media for the music 

]]> Sharon Buzzsprout-10273256 Fri, 18 Mar 2022 12:00:00 +0000 2491 1 full false