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# Childrens Palliative Hub

## Sitemaps

- [XML Sitemap](https://childrenspalliativehub.com/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Update: Adolescents and Young Adults](https://childrenspalliativehub.com/update-adolescents-and-young-adults/) - We have recently updated our resources to include further resources related to Adolescents and Young Adults. You can view the new updated page here
- [Update: Spirituality Page](https://childrenspalliativehub.com/update-spirituality-page/) - We have recently updated the Spirituality page with further information and content, you can view the updated page by clicking this link: https://childrenspalliativehub.com/palliative-care-journey/end-of-life-care/spirituality-and-the-role-of-a-chaplain/
- [Updated Palliative Journey Resources](https://childrenspalliativehub.com/updated-palliative-journey-resources/) - We have now launched individual resource pages for the different chapters in the Palliative Care Journey These appear at the top of the Palliative Care Journey areas, but can also be viewed below: Diagnosis and Prognosis: https://childrenspalliativehub.com/palliative-care-journey/diagnosis-and-prognosis/resources/ Caring and Support: https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/care-resources/ Transition Care: https://childrenspalliativehub.com/palliative-care-journey/transition-care/resources/ End of Life: https://childrenspalliativehub.com/palliative-care-journey/end-of-life-care/resources/ Bereavement: https://childrenspalliativehub.com/palliative-care-journey/bereavement/resources/ If you have any feedback
- [Update: Home Care](https://childrenspalliativehub.com/update-home-care/) - Updated Home Care Section We have recently updated the Children's Palliative Hub - Home Care section (https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/home-care/) to include more detailed information on providing care for a child or young person at home. You can also find more detailed information on accessing home care services from both Northern Ireland and the Republic of Ireland.
- [Update: Undiagnosed Conditions](https://childrenspalliativehub.com/update-undiagnosed-conditions/) - We have recently updated the "Undiagnosed Conditions" page within the Children and Young Persons Palliative Hub, with updated links to resources and information. You can view the latest updates here: https://childrenspalliativehub.com/resources/condition-specfic-help/undiagnosed/
- [View Services Available](https://childrenspalliativehub.com/view-services-available/) - We have updated our "Services" pages for both the Republic of Ireland (RoI) and Northern Ireland. Click this link to select your country and find more services available to you: https://childrenspalliativehub.com/services/
- [Welcome to our new look site](https://childrenspalliativehub.com/welcome-to-our-redeveloped-site/) - Exciting News! We are absolutely delighted to announce the launch of our new look site The Palliative Hub - Children and Young People. Over the past few months, we have worked to ensure that parents, families, and carers have access to the most up-to-date information, resources, and services to support them through their child's palliative
- [Updated Resources](https://childrenspalliativehub.com/updated-resources/) - We have recently updated our "Resources" section, visit the link here: https://childrenspalliativehub.com/resources/ to view the new areas
- [View our new leaflet](https://childrenspalliativehub.com/view-our-new-leaflet/) - We have recently released our brand new leaflet for our updated website. You can view or download it here: https://aiihpc.org/wp-content/uploads/2025/01/Children-Young-People-Brochure.pdf If you would like to request some copies of the leaflet, please contact dwilkinson@aiihpc.org
- [Transition Care Update](https://childrenspalliativehub.com/transition-care-update/) - We have now updated The Palliative Care Journey - Transition Care and the new material can be viewed here: https://childrenspalliativehub.com/palliative-care-journey/transition-care/ Dr Hannah Linane kindly produced this content for us and we hope that you find it useful in learning more about Transition Care.

## Pages

- [Home](https://childrenspalliativehub.com/) - Welcome to the Palliative Hub - Children and Young People This website is for parents, carers and those involved in the care of a child or young person with palliative care needs in the Republic of Ireland and Northern Ireland This website is for parents, carers and those involved in the care of a child
- [Palliative Care Hub - About](https://childrenspalliativehub.com/about-us/palliative-care-hub-about/) - Home » About Us » Palliative Care Hub – About Palliative Care Hub - About The Palliative Care Hub has been developed by AIIHPC with member organisations, key stakeholders and AIIHPC’s Voices4Care volunteers group to act as a gateway to information and resources about palliative care on the island of Ireland. The Palliative Care Hub
- [Children’s Palliative Hub Collaborators](https://childrenspalliativehub.com/about-us/childrens-palliative-hub-collaborators/) - Home » About Us » Children’s Palliative Hub Collaborators The Palliative Hub - Children and Young People Collaborators The Children’s Palliative Hub would not have been possible without the expert input of a number of organisations and individuals. These experts and volunteers included professionals who work directly in the children’s palliative care sector, funders of
- [Key Documents](https://childrenspalliativehub.com/what-is-palliative-care/key-documents/) - Home » What is Palliative Care » Key Documents Key Documents This section of the website contains the main policy documents relating to children’s palliative care in Northern Ireland and the Republic of Ireland. Republic of Ireland Palliative Care For Children With Life-Limiting Conditions In Ireland- A National Policy This policy provides a foundation upon
- [ROI Services](https://childrenspalliativehub.com/services/roi-services/) - Home » Services » ROI Services Republic of Ireland Services See below links to providers and services you can access within the Republic of Ireland. You can also view Condition Specific organisations by clicking hereIf you would like your organisation to appear here, please email info@aiihpc.org Direct Care Providers - Organisations who provide direct care
- [Undiagnosed](https://childrenspalliativehub.com/resources/condition-specfic-help/undiagnosed/) - Home » Resources » Condition Specfic Help » Undiagnosed Undiagnosed Many children who are born with or develop a life threatening or life-limiting condition may not actually ever receive a full diagnosis of what their condition is or it may take considerable time to for a diagnosis to happen. This is sometimes abbreviated to SWAN
- [Adolescent Young Adult - Information Guides and Resources​](https://childrenspalliativehub.com/palliative-care-journey/adolescent-young-adult-information-guides-and-resources/) - Home » Palliative Care Journey » Adolescent Young Adult – Information Guides and Resources​ Adolescent Young Adult - Information Guides and Resources CCLG: The Children & Young People’s Cancer Association (UK based) The Children & Young People’s Cancer Association unite the children and young people’s cancer community, driving collective action and progress. Powered by expertise,
- [Resources for Young People](https://childrenspalliativehub.com/palliative-care-journey/resources-for-young-people/) - Home » Palliative Care Journey » Resources for Young People Resources for Young People Children and young people can sometimes experience challenging situations when someone they care about is living with a serious illness, receiving palliative care, or following a death or bereavement. Having access to clear, age-appropriate information and support can help them understand
- [Transition Care - Adolescents & Young Adults](https://childrenspalliativehub.com/palliative-care-journey/transition-care-aya/) - Home » Palliative Care Journey » Transition Care – Adolescents & Young Adults Transition Care This page is for young people and their families, carers and loved ones who are navigating palliative care and the transition to Adult palliative care services. On this page you will find information guides, resources and services to help you.
- [Respite Care](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/respite-care/) - Home » Palliative Care Journey » Caring and Support » Respite Care Respite Care Respite Care or Short Breaks provides an integral part of the overall care of a child. In this section Liz O’Donoghue, Lauralynn Children’s Hospice and Grace Stewart, Northern Ireland Children’s Hospice, explain what respite care is and its importance in caring
- [Adolescent & Young Adult - Life Limiting conditions](https://childrenspalliativehub.com/palliative-care-journey/adolescent-young-adult-life-limiting-conditions/) - Home » Palliative Care Journey » Adolescent & Young Adult – Life Limiting conditions Adolescents and Young Adults - Cancer and Non-Cancer Barretstown - RoI Barretstown offer medically endorsed therapeutic camps and programmes for children with cancer and other serious illnesses. Camps feature a range of adventurous and challenging activities, all supported by medical and
- [Information Resources](https://childrenspalliativehub.com/palliative-care-journey/information-resources/) - Home » Palliative Care Journey » Information Resources Information Resources Irish Cancer Society Your Guide for Dealing with Cancer 16-24 yearsLink to Download: Your Guide for Dealing with Cancer 16 – 24 years Hospice UK This guide provides information for living with a life limiting illness as a teenager or young adult. This information and
- [Transition Care](https://childrenspalliativehub.com/palliative-care-journey/transition-care/) - Home » Palliative Care Journey » Transition Care Transition Care “On their second visit Michael loved it, he had ‘great craic’ with the other boys and the staff and Mary enjoyed the break too and they couldn’t wait until their next stay came around. Mary says that this too was a great opportunity for Michael
- [Palliative Care Journey (DUPLICATE)](https://childrenspalliativehub.com/palliative-care-journey-duplicate/) - Home » Palliative Care Journey (DUPLICATE) Palliative Care Journey Every family and child’s experience of palliative care is unique. A family’s interaction with the various services and the length of time a child needs palliative care will vary between cases. This part of the website is aimed at trying to break down into very broad
- [Resources](https://childrenspalliativehub.com/palliative-care-journey/bereavement/resources/) - Home » Palliative Care Journey » Bereavement » Resources Bereavement Resources Bereavement: Postnatal Information This booklet is for parents whose baby has died. It has been developed by The Rotunda Hospital Dublin to provide you with some practical information to help you in the weeks after the delivery of your baby.You can view the resource
- [Rare Conditions](https://childrenspalliativehub.com/resources/condition-specfic-help/rare-conditions/) - Home » Resources » Condition Specfic Help » Rare Conditions Rare Conditions There are a number of rare conditions that could not be listed on main condition specific help page due to the number of rare conditions that exist. Below we have provided links to organisations who may provide general guidance and support for those
- [Resources](https://childrenspalliativehub.com/palliative-care-journey/end-of-life-care/resources/) - Home » Palliative Care Journey » End of Life Care » Resources End of Life Care Resources Caring for your child at end of life This guide provides practical information to support families at this most difficult of times. It aims to answer some of the questions that families might have, with some reflections from
- [Resources](https://childrenspalliativehub.com/palliative-care-journey/transition-care/resources/) - Home » Palliative Care Journey » Transition Care » Resources Transition Care Resources A checklist to a good transition This resource provides a checklist in phases for transitioning from childrens services to adults services.Click here to view the resource: https://www.togetherforshortlives.org.uk/app/uploads/2018/03/18-03-20-A-checklist-to-a-good-transition.pdf Moving to Adult Services: What to Expect This guide has been developed to help young
- [Home Care](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/home-care/) - Home » Palliative Care Journey » Caring and Support » Home Care Home Care Many children who have palliative care needs are cared for at home. In this section Dr Maria Brenner, Tyrone Horne and Grace Stewart offer practical advice on moving from care in a professional environment to caring for a child at home.This
- [Hospice Care](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/hospice-care/) - Home » Palliative Care Journey » Caring and Support » Hospice Care Hospice Care Hospice care forms an integral part of the palliative care service. Below is an overview of what hospice care is, how to access their services and links to the major children’s hospice care providers in the Republic of Ireland and Northern
- [NI Services](https://childrenspalliativehub.com/services/ni-services/) - Home » Services » NI Services Northern Ireland Services See below links to providers and services you can access within Northern Ireland. You can also view Condition Specific organisations by clicking hereIf you would like your organisation to appear here, please email info@aiihpc.org Direct Care Providers - Organisations who provide direct care Bliss One in
- [Spirituality and the Role of a Chaplain](https://childrenspalliativehub.com/palliative-care-journey/end-of-life-care/spirituality-and-the-role-of-a-chaplain/) - Home » Palliative Care Journey » End of Life Care » Spirituality and the Role of a Chaplain Spirituality Spiritual Care for a Child or Young Person with a Life-limiting IllnessEvery child is a spiritual being. Supporting a child’s spiritual needs is just as important as caring for their physical and emotional wellbeing. Whether a
- [Videos](https://childrenspalliativehub.com/resources/videos/) - Home » Resources » Videos Videos No Time to Die – RTE Documentary‘No Time To Die’ reveals pediatric palliative care through the eyes of four families, offering a rare insight into the realities of life caring for a dying child. In this special one-off documentary we show the dignity and courage of families as they
- [Your stories](https://childrenspalliativehub.com/your-stories/) - Home » Your stories Your stories Thompson family-LauraLynn We’re Carla and Kris Thompson. We’re from Mullingar, Co Westmeath and Lucy Thompson is our daughter. Lucy is our eldest girl of two…. Read more Amy McSweeney Hi, my name is Amy McSweeney and I’m from Middleton County Cork. Our daughter Emily is 11 years old…. Read
- [Hospital Care](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/hospital-care/) - Home » Palliative Care Journey » Caring and Support » Hospital Care Hospital Care Hospital can often be the first place that many parents and children will hear the term palliative care. Below an overview is provided of the role of hospitals in a palliative care settingLiz O’Donoghue – Clinical Nurse Specialist Our Lady’s Children’s
- [Bereavement](https://childrenspalliativehub.com/palliative-care-journey/bereavement/) - Home » Palliative Care Journey » Bereavement Bereavement Click here to see resources related to BereavementThe death of a child can profoundly impact a wide circle of people, both directly and indirectly. Grief ripples through the family (parents, siblings, grandparents and extended family), social circles, and community, affecting people in different ways based on their
- [End of Life Care](https://childrenspalliativehub.com/palliative-care-journey/end-of-life-care/) - Home » Palliative Care Journey » End of Life Care End of Life Care “We are so glad that we got to have Holly at home. For us, it was the best option for everyone – for Martin and I, for Andrew and Delphi, for her grandparents, uncles, aunties, friends but especially and most importantly
- [Caring and Support](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/) - Home » Palliative Care Journey » Caring and Support Caring for your child “Meeting them in person, it’s clear they’ve worked hundreds of minor miracles. And so has Sean himself. Twelve years later, he is still living out his very full life, his winning personality proudly breaking through his severe physical and neurological disabilities. Everyday
- [Diagnosis and Prognosis](https://childrenspalliativehub.com/palliative-care-journey/diagnosis-and-prognosis/) - Home » Palliative Care Journey » Diagnosis and Prognosis Diagnosis and Prognosis “When our oncologist broached the idea of palliative care, she pointed out that it was not an admission of defeat against Sylvie’s disease. The care would step in and help as necessary, and step out when no longer needed. Even so, at the
- [Condition Specfic Help](https://childrenspalliativehub.com/resources/condition-specfic-help/) - Home » Resources » Condition Specfic Help Condition Specific Help This page contains a list of diseases that a number of children in the Republic of Ireland and Northern Ireland suffer from. This is not an exhaustive list, there are many more rare diseases that are not listed here. Where possible we have tried to
- [Cookie Policy](https://childrenspalliativehub.com/about-us/cookie-policy/) - Home » About Us » Cookie Policy
- [Care Resources](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/care-resources/) - Home » Palliative Care Journey » Caring and Support » Care Resources Care Resources A Parent’s Guide – Making Critical Care Choices for your Child The document is written in a simple question and answer style format, and includes some of the key questions or concerns regarding critical care.Link to Download: A Parent’s Guide – Making
- [Resources](https://childrenspalliativehub.com/palliative-care-journey/diagnosis-and-prognosis/resources/) - Home » Palliative Care Journey » Diagnosis and Prognosis » Resources Diagnosis and Prognosis - Resources Together for Short Lives - Family Resources Together for Short Lives family resources are created to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition. They are free to download
- [Sean's Story](https://childrenspalliativehub.com/your-stories/seans-story/) - Home » Your stories » Sean’s Story Sean's Story When your child is first diagnosed, you bury your dreams and later you need to imagine new dreams. Because every man has a dream about his son – that he’ll play hurling for Limerick, rugby for Munster. That he or she will be a doctor, a
- [Sylvie's Story](https://childrenspalliativehub.com/your-stories/sylvies-story/) - Home » Your stories » Sylvie’s Story Sylvie's Story When our oncologist broached the idea of palliative care, she pointed out that it was not an admission of defeat. The care would step in and help as necessary, and step out when no longer needed. Even so, at the time we thought that it was
- [Caoimhe’s Story](https://childrenspalliativehub.com/your-stories/caoimhes-story/) - Home » Your stories » Caoimhe’s Story Caoimhe’s Story The term ‘life-limiting’ is infused with sadness, worry and heartbreak. But most families who have children with a ‘life-limiting’ condition turn that diagnosis on its head. And if ever a couple embodied the inherent contradiction between what the words mean – and how a family copes
- [Emma's Story](https://childrenspalliativehub.com/your-stories/emmas-story/) - Home » Your stories » Emma’s Story Emma's Story “Emma’s going off to the moon”. This was the ingenious way three and a half year-old Billy Heffernan found words to explain his infant sister’s passing. His dad Fergie had just broken it to him that Emma was ‘going’. So now every night Billy waves at
- [Muireann's Story](https://childrenspalliativehub.com/your-stories/muireanns-story/) - Home » Your stories » Muireann’s Story Muireann's Story A place I consider beautiful may seem strange but to me it is the most beautiful place in the world. It is the place where my sister sleeps in a covered wooden bed with her favourite toys and a picture of my family, her blanket, earth
- [Victoria's Story](https://childrenspalliativehub.com/your-stories/victorias-story/) - Home » Your stories » Victoria’s Story Victoria's Story In early 2012, Brian and Sharon Thompson were told their only and beautiful daughter, Victoria, was going to die. But as well as coping with that, they also began to realise they would have to fight to secure the best end-of-life care for her. Victoria arrived
- [Holly's Story](https://childrenspalliativehub.com/your-stories/hollys-story/) - Home » Your stories » Holly’s Story Holly's Story “We are so glad that we got to have Holly at home. For us, it was the best option for everyone – for Martin and I, for Andrew and Delphi, for her grandparents, uncles, aunties, friends but especially and most importantly for Holly. She felt safe
- [Chris Herdman and daughter Aideen's Story](https://childrenspalliativehub.com/your-stories/chris-herdman-and-daughter-aideens-story/) - Home » Your stories » Chris Herdman and daughter Aideen’s Story Chris Herdman and daughter Aideen's Story I’m just on my way down to pick Aideen up from the Special Care Unit which she attends Monday to Friday from 9 till about half 2. And Aideen’s Special Care Unit, this week are having their fun
- [Olive Tumulty's Story](https://childrenspalliativehub.com/your-stories/olive-tumultys-story/) - Home » Your stories » Olive Tumulty’s Story Olive Tumulty's Story My daughter Katie was born in 2010 at 31 weeks so she was premature. She was in hospital for the first six months of her life. After a lot of tests, we got a diagnosis of mitochondrial disease which we had never heard about
- [Claire Gray – Matilda’s mummy](https://childrenspalliativehub.com/your-stories/claire-gray-matildas-mummy/) - Home » Your stories » Claire Gray – Matilda’s mummy Claire Gray – Matilda’s mummy Basically Matilda was palliative care from she was five days old. It was 10 to 5 in the afternoon on a Thursday and the consultant said, ‘your little girl has a very serious condition, it’s called Edwards Syndrome, Trisomy 18’.
- [The Creegan family’s story](https://childrenspalliativehub.com/your-stories/the-creegan-familys-story/) - Home » Your stories » The Creegan family’s story The Creegan family’s story Ann-Marie: When Katie got out of hospital, she had a central line in so we had a visit from the community nurse, quite regular. And she knew, the community nurse knew that we were … not struggling … we were glad to have
- [Amy McSweeney](https://childrenspalliativehub.com/your-stories/amy-mcsweeney/) - Home » Your stories » Amy McSweeney Amy McSweeney Hi, my name is Amy McSweeney and I’m from Middleton County Cork. Our daughter Emily is 11 years old. She was born on the 4th of April 2012. Emily was born with a cleft lip and palate and was later diagnosed with a developmental delay, autism
- [Kayleigh and Nikita O’Connor](https://childrenspalliativehub.com/your-stories/kayleigh-and-nikita-oconnor/) - Home » Your stories » Kayleigh and Nikita O’Connor Kayleigh and Nikita O’Connor My name is Kayleigh, and I have a four year old girl called Nikki, and she has acute lymphoblastic leukemia. We are from Wexford, and we have to travel to Crumlin a lot for treatment. Nikita was diagnosed when she was just
- [Thompson family-LauraLynn](https://childrenspalliativehub.com/your-stories/thompson-family-lauralynn/) - Home » Your stories » Thompson family-LauraLynn Thompson family-LauraLynn We’re Carla and Kris Thompson. We’re from Mullingar, Co Westmeath and Lucy Thompson is our daughter. Lucy is our eldest girl of two. She has a little sister called Romy who has just turned two. Lucy will be six in October, and she lives at home
- [About Us](https://childrenspalliativehub.com/about-us/) - Home » About Us About Us The Palliative Hub – Children and Young People has been developed by The All Ireland Institute of Hospice and Palliative Care (AIIHPC) with a number of collaborators to act as a gateway to information about children and young people’s palliative care on the island of Ireland. It is aimed primarily at assisting parents,
- [Making Memories](https://childrenspalliativehub.com/palliative-care-journey/end-of-life-care/making-memories/) - Home » Palliative Care Journey » End of Life Care » Making Memories Making Memories Experts agree that one of the most positive things you can do during your child’s life is focus on making memories. Having those wonderful shared experiences you have enjoyed with your child will not only help you to remember your
- [Spirituality and the Role of a Chaplain](https://childrenspalliativehub.com/spirituality-and-the-role-of-a-chaplain/) - Home » Spirituality and the Role of a Chaplain Spirituality and the Role of a Chaplain In this short video Thomas Begley, Chaplain LauraLynn Chidlren’s Hospice, explores the role of a chaplain in the hospice setting and explores what spirituality is and its role within palliative care.
- [Useful Downloads](https://childrenspalliativehub.com/resources/useful-downloads/) - Home » Resources » Useful Downloads Useful Downloads Making Memories Experts agree that one of the most positive things you can do during your child’s life is focus on making memories. Having those wonderful shared experiences you have enjoyed with your child will not only help you to remember your time with your child but
- [About AIIHPC](https://childrenspalliativehub.com/about-us/about-aiihpc/) - Home » About Us » About AIIHPC About AIIHPC Building Partnerships in Palliative CareAll Ireland Institute of Hospice and Palliative Care (AIIHPC) is a leading organisation with national and international influence promoting excellence in palliative care. AIIHPC is a collaborative of hospices, health and social care organisations, charities and universities on the island of Ireland.
- [Planning Ahead](https://childrenspalliativehub.com/palliative-care-journey/caring-and-support/planning-ahead/) - Home » Palliative Care Journey » Caring and Support » Planning Ahead Planning Ahead Advanced Care Planning is an important stage in the care of a child with a life limiting or life threatening conditions. This section gives an overview of what Advanced Care Planning is and why it is an important step in the
- [What is Palliative Care](https://childrenspalliativehub.com/what-is-palliative-care/) - Home » What is Palliative Care About Children's Palliative Care Palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for
- [Resources](https://childrenspalliativehub.com/resources/) - Home » Resources Resources This part of the website contains a number of resources for parents and carers. They include disease specfic help links, links to general service providers, learning material, policy documents, definitions of common palliative care terms and a list of commonly asked questions.
- [Palliative Care Journey](https://childrenspalliativehub.com/palliative-care-journey/) - Home » Palliative Care Journey Palliative Care Journey Every family and child’s experience of palliative care is unique. A family’s interaction with the various services and the length of time a child needs palliative care will vary between cases. This part of the website is aimed at trying to break down into very broad terms
- [Services](https://childrenspalliativehub.com/services/) - Home » Services Services I live in ... Northern Ireland Republic of Ireland
- [Hayden McLafferty](https://childrenspalliativehub.com/your-stories/hayden-mclafferty/) - Home » Your stories » Hayden McLafferty Hayden McLafferty My name is Hayden, I’m 17 and I live in Clondalkin. When I was a baby I cant remember that much but I had numerous surgeries to see whats goin on with my heart, couldn’t fix it. It’s a heart disease, they, the doctors and nurses
- [Caroline Gorrigan](https://childrenspalliativehub.com/your-stories/caroline-gorrigan/) - Home » Your stories » Caroline Gorrigan Caroline Gorrigan Hi I’m Caroline, I work in LauraLynn on the community team. So Lauralynn was founded by the McKenna family and they had two young girls who very sadly passed away within a short space of time and the family did lots of fundraising to create this
- [Sam & Isabella Villena](https://childrenspalliativehub.com/your-stories/sam-isabella-villena/) - Home » Your stories » Sam & Isabella Villena Sam & Isabella Villena Hi, I’m Sam and this is my daughter Isabella. She’s nine. Isabella was born with a rare neurological condition called Aicardi Syndrome and she was diagnosed at four days old. So when we got Isabella’s diagnosis, it was like our world was
- [Michael's Story](https://childrenspalliativehub.com/your-stories/michaels-story/) - Home » Your stories » Michael’s Story Michael's Story Mary says that she had always associated respite with nursing homes and was very apprehensive but as they were introduced very gradually they eventually came around to the idea and went up to see the unit….The first time they went up Michael was terrified at the
- [Questions and Definitions](https://childrenspalliativehub.com/resources/questions-and-definitions/) - Home » Resources » Questions and Definitions Questions and Definitions Below you will find links to resources that will help you find answer to many of the commonly asked questions about children’s palliative care and also definitions for terms used within children’s palliative careRepublic of IrelandThe Jack & Jill Children’s FoundationIn dealing with your child’s

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- [Uncategorized](https://childrenspalliativehub.com/category/uncategorized/)