Support For Families
- Family Support Overview
- Supporting The Family
- Supporting Parents
- Supporting MPD Children
- Supporting Siblings
Within the Walking With Giant Foundation we firmly believe that with the right support, individuals affected by Microcephalic Primordial Dwarfism and their families (parents and siblings) can thrive, succeed and reach their full potential in life.
The Walking With Giants Foundation is here for families, parents, children who have MPD and their siblings who at different periods of their lives may need additional support, more so when a child is diagnosed with MPD.
We listen and respond to individual needs. It’s not about telling you what to do. It’s about helping individuals within the family to become empowered to build on they already have, so that they can achieve the highest quality of their life you and recognise what the family is capable of.
We offer and provide families that have a child affected by Microcephalic Primordial Dwarfism with advice, information and support, particularly at times of change, challenge and crisis.
Our service is accessible to all families from within the UK and around the world whatever their background. We aim to give caring, practical and confidential support whilst empowering families, in a non–threatening way, to consider the choices available to them and make the best use of our available services.
Services provided to families within our network are seen as essential, invaluable and tailored to meet the needs of families in an accessible, proactive and positive way.
Through direct experience, we know that it’s very hard for parents when they are told that their child has Microcephalic Primordial Dwarfism. A lot goes through mum’s and dad’s mind in those early day’s. They’ll worry about their child’s health, the impact on siblings, about finances, and as their child get older they’ll be presented with the next the periods of worry (isolation, education, society’s perception of their child and their condition).
As a whole this can have an impact on mental and physical health, other siblings, family finances, affect decisions about work, education/training, having additional children, relying on other family members, friends and public support, and the feeling of being isolated.
It is recognised by many professions, national and internal organisations that parents and families with a child affected by a disability are constantly disadvantaged in many aspects of everyday life.
This is were the Walking With Giants Foundation can help. We aim to support, empower and work with parents to give you the skills, knowledge and a support network to care for your child with confidence.
We can conduct home visits if you live in the United Kingdom or video conference if you are from outside of the United Kingdom to offer support and advice during those early days or for Education, Benefits, Health and Care Plan applications and reviews.
We know that you want to do the very best for your child, to aid their development and help them towards independence, along with allowing your child to reach their full potential in life and the Walking With Giants Foundation is here with you all the way.
It is recognised by most medical and counselling professions that people with a health problem finds that a part of the healing process is having someone to listen to or relate to.
Children with an ultra-rare condition like Microcephalic Primordial Dwarfism are no different, they find it comforting and helpful to talk to or meet someone with the same condition – someone who has experienced the same things that they are facing. Isolation is a major factor affecting children affected by Microcephalic Primordial Dwarfism because there aren’t many other people out there living with the condition.
We provide opportunities to alleviate this from the onset by connecting new families that contact us with other families within our family support network. Then we provide opportunities for children who have Microcephalic Primordial Dwarfism to interact with each other via our annual convention events and other events.
When a family has a child with a condition like Microcephalic Primordial Dwarfism, parents or carers often find it very difficult to devote time and attention to siblings.
It is common for siblings whose brother or sister has Microcephalic Primordial Dwarfism to sometimes feel concerned, confused or left out.
For parents or carers, it can be a challenge to respond to the needs of their other children, especially when the child has other underlying medical problems which requires them being in hospital for prolonged periods.
Where possible and when requested the Walking With Giants Foundation via our Family support agenda will source out and fund opportunities for siblings to relax, enjoy activities in a different environment and share their experiences with other children.
We Need Your Support!
With your help, we can provide direct support, vital information, advice and services to help individuals and families reach their full potential in life, in a world that is not made for them!
We help remove the isolation families and individuals affected by Microcephalic Primordial Dwarfism feel by bringing them into contact with other families, individuals and provide opportunities to meet, so they can come together to create friendships and share experiences.
We support families and individuals living with Microcephalic Primordial Dwarfism to build lasting, positive family memories and strengthen their family relationships especially during times of crisis and isolation.
Provide medical and non medical information in easy-to-understand terms to help individuals, parents and other interested parties (for example medical professions, education providers, social workers and the general public) to learn more about Microcephalic Primordial Dwarfism, available treatment options, current research and the social barriers.
We provide parents with access to doctors, scientists and other medical professionals on our Medical Advisory Board who are actively conducting research into the causes of Microcephalic Primordial Dwarfism, along with helping parents obtain a diagnosis and provide them and their child’s doctors with information on how to manage these rare conditions and the life limiting and life-threatening underlying medical issues these rare condition bring.
Frequently Asked Questions:
I think our child has Microcephalic Primordial Dwarfism. Can you help us?
Yes we can! All you need to do is send an email to Sue Connerty at firstname.lastname@example.org and she will get back to you via email asking some information about your child. On receipt of your reply, she will the assess the information and consult with doctors on our Medical Advisory Board. If all information corresponds with the criteria needed for the WWGF to your child and your family, The WWGF will then send you some information how to regisiter for support and unite with other families affected by Microcephalic Primordial Dwarifism.
How can I help the Walking With Giants Foundation?
How do I make a donation?
There are several ways that you can make a donation, please visit our 'Making A Donation' page.
If you would like your donation to be recognised please let us know by:
Calling us 0151 526 0134 (from within the UK),
Calling us +44 151 526 0134 (from outside of the UK),
Email us on email@example.com,
or by writing to us at, Walking With Giants Foundation, PO Box 85, Maghull, Liverpool, L31 6WW.