WWGF Family Support
When you're first given the news that your child has been pre-diagnosed or diagnosed with Primordial Dwarfism along with the different life threatening medical issues they may face, your emotions can be very mixed and extreme. Parents encounter the feelings of isolation, anxiety, sadness, despair, guilt and anger mixed up with an overwhelming love and protectiveness.
This is common situation with many parents when their child is born or later diagnosed with a disability or find themselves in a position when one of their children, another family member or even themselves are diagnosed with a life threatening condition.
Due to the rarity of Primordial Dwarfism and it's sub-types, parents feel frustrated due to the lack of information at the time of the initial pre-diagnosis or formal diagnosis, more so as they are referred from one specialist to another, desperately seeking to understand what is going one with their child.
One thing that we want to try to ensure and explain to you is that you are not alone! We have members of staff who have over 10 years experience of dealing with Primordial Dwarfism and who children affected by Primordial Dwarfism. We have volunteers that have gained invaulable experience of supporting families and individuals affected by Primordial Dwarfism
In additional to abe, we have a network of families from around the UK and around the world who have been and are in the same situation as yourself. We cannot guarantee to alleviate all the feeling you are experiencing but with the right support and guidance we can help you to become empowered to deal with the many situations your child and you as a family will face in the future.
We provides a range of support to parents from diagnosis through treatment via our doctors on our Medical Advisory Board . We support the whole family both emotionally and practically including siblings and grandparents by phone, email or in person if your living in the UK.