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General Resources

 

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ARC offers non-directive information and support to parents before, during and after antenatal screening; when they are told their baby has an anomaly; when they are making difficult decisions about continuing with or ending a pregnancy, and when they are coping with complex and painful issues after making a decision, including bereavement.

https://www.arc-uk.org/for-parents/publications-2/supporting-you-throughout-your-pregnancy-2

 

 

 

 

 

 

 

Fathers Network Scotland is a third sector organisation promoting the role of Dads across Scotland. Primarily involved in supporting organisations to become more welcoming to dads, they also have a fantastic resource directory of organisations and groups in Scotland that are dad-friendly!

https://www.fathersnetwork.org.uk/directory

 

 

 

 

The Exceptional Families Project (EFP) is a partnership between Kindred and Children with Exceptional Healthcare Needs, National Managed Clinical Network (CEN NMCN). Any parent of a child with exceptional healthcare needs in Scotland is welcome to join the project. Please feel free to get in touch and find out more about our project for parents. The project aims are to:

  • Give parents the opportunity to share their experiences and to use this valuable information to shape policy and provision;
  • Deliver a range of engagement events which allow families to network with each other, find out about CEN, and access useful information;
  • Develop a national parent forum, connected by an e-newsletter;
  • Provide individual support to parents of CEN which includes applying for benefits, accessing grants and advocacy for statutory care and support;
  • To encourage parents to participate in the Clinical Audit System and join the CEN network

http://www.kindred-scotland.org/efp/ 

 

 

 

 

 

Many children with Trisomy conditions are born with differences to their limbs. The Lucky Fin project is an American charity that has created an information and support network for families across the US and beyond. This resource was recommended to us by a Trisomy family who found their information helpful. They have a collated a great range of resources on research and resources for young people with limb differences, including links to a range of children’s books. They also work to raise awareness of limb difference, including working with a range of ambassadors who all have limb differences themselves. It is a really positive, capability focussed, look at living with these conditions.

 https://luckyfinproject.org/

 

Jovie's Journey was setup to support families facing an uncertain diagnosis, and celebrate the life of Jovie. 

Visit their Facebook Page for more info

 

 

 

Project Linus UK is a volunteer organisation which provides homemade quilts, blankets and incubator covers to children in hospitals and hospices. Since 2000 our volunteers have created over 145,000 quilts. Find out more https://projectlinusuk.org.uk/

https://projectlinusuk.org.uk/

Same but Different is a not-for-profit organisation who use the arts to give a greater voice to those affected by disability and rare diseases. We help people to see the person behind the condition and work with our partners to bring communities closer together. We create thought-provoking art projects that stimulate conversation, change attitudes and empower those affected.

Their Rare Project, which spotlights people affected by Rare Conditions, features the beautiful Natalia who has Partial Trisomy 18.

www.samebutdifferentcic.org.uk/natalia

The Inclusive Home is a website and blog by an architect and mum on inclusive design, prompted by her challenges designing the perfect environment for her young daughter! It features campaigns on everything from the provision of Changing Places in the community to promoting inclusive design in community housing!

www.theinclusivehome.co.uk

 

Thanks to medical advances, an increasing number of young people are now requiring transitional support from paediatric to adult services. There are now almost 13,000 18-25 year olds with life limiting conditions in England. In November 2018, Together for Short Lives launched their Fund for Change in transitional services. Alongside this they have produced some useful resources for families approaching transition.

 

https://www.togetherforshortlives.org.uk/changing-lives/developing-services/transition-adult-services/research-best-practice/ 

 

The Office for Rare Conditions wants to empower patients and families to be able to take responsibility for their own health and wellbeing and to support self management in rare conditions. To help us achieve this the Office provides patients with information, signposts to appropriate resources and other organisations and connects people with rare conditions to each other. We want to help develop a strong network of patient support organisations, to be a strong voice together. Working with health care professionals, the Office assists clinical services to provide information events for patients and families and education events for professionals.

https://officeforrareconditions.org/ 

 

Yourgenome is a website that enables you to find out more about genetics. You’ll be able to find out what a genome is and how we sequence the DNA from an organism. You’ll also be able to explore what genetics can tell us about an individual and a population and why this can sometimes throw up some tricky ethical questions and debates. The website is produced by the Public Engagement team at the Wellcome Genome Campus near Cambridge in the UK.

What is a chromosome?
What types of mutation are there?
What is a genetic disorder?
What is a chromosome disorder?
What is genetic testing?
Genetic counselling

https://www.yourgenome.org/ 

Over 5,000 parents every year have to say goodbye early to their desperately wanted babies due to termination for medical/ maternal health reasons.
TFMR Mamas offers support groups and resources to help the 'Termination for Medical Reasons' community to feel supported and not alone.
https://www.tfmrmamas.com/

Books

 

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The Still Point of the Turning World by Emily Rapp 

When Emily Rapp’s nine month old son Ronan was diagnosed with Tay-Sachs disease all her plans for her son’s future changed. Rapp and her husband had to change the way they thought of their role as parents and to live with their child in the moment. It is the moving story of a mother’s journey through grief.

 

 

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny by Amy Julia Becker 

This book, published by a Christian publisher, describes the author’s relationship with her first-born child. Penny was born with Down’s Syndrome, which came as a surprise to her family. The book contains lessons on pity versus compassion. You can read more from the author on faith, family and disability:

 

 

The Boy in the Moon by Ian Brown

This book is a wonderful memoir by Canadian journalist Ian Brown to his son, Walker. Walker was born with CFC (cardiofaciocutaneous) syndrome, a rare orphan genetic condition. It charts Brown’s journey from self-blame and a desire to “fix” Walker to acceptance of his extraordinary son just the way he is. Listen to Brown on CBC Radio www.cbc.ca/books/canadareads/2011/11/ meet-top-10-author-ian-brown.html

 

 

The Day the Sea Went Out and Never Came Back by Margot Sunderland (Author) and Nicky Armstrong (Illustrator)

This is one in a nine-part series of illustrated books designed to help children think about, and connect with, their feelings. In this title, Eric the Sea Dragon learns to treasure the precious memories of the sea that he has lost.

 

CHROMOSOME KIDS LIKE ME

Is a sweet, fun story that takes something complex - understanding chromosome disorders - and compares it to something we can all understand - socks! This charming book is the perfect way to teach children (and adults!) about rare chromosome abnormalities and what makes the people who have them special. Written by the mother of a child with unique chromosomes and reviewed by a geneticist, this easy-to-understand book will warm your heart and help you understand chromosome disorders. It is the perfect gift for special needs families, including parents, grandparents, siblings and children with rare chromosome conditions, and an excellent teaching resource for professionals working with them.


LOSS BOOKS

As parents, we make every effort to shield our children from the pain of grieving and loss. Unfortunately, this is often not a privilege that parents of children with Trisomy are afforded as we grapple with a life changing diagnosis early in our child’s life. Familial loss of any sort is a grief unlike any other, and it is often difficult to find words that accurately relay our sentiments to another person. This is even more true when we have to begin the delicate and painful conversation of loss with our children at a younger age than anticipated. Loss Books Ltd provide a personalised book which explains the loss of a family member to children in safe, comforting dialogue. They not only address the sensitive matter of loss but are also a tool to remember your loved one. They are based on a book that Kate Polley created after the loss of one of her twin sons to address his death with her surviving son. They can now be personalised to address any loss and as they say themselves “This unique range of baby and childloss books are a valuable educational tool to assist parents and educators to explain death to young children. The books also appeal to readers of all ages. Through gentle prose and beautiful illustrations they remind us that we can experience the love and joy of a loved one, even when they are no longer with us here on earth.” We are hoping to work with Loss Books to carry a range of their items in stock for our SOFT siblings. However until this is set up, you can purchase online from their website www.lossbooks.com. They are a creative, thoughtful and personal way of keeping the memory of a loved one alive.

 


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