Helping with Accessibility

charlotte-and-mumHi name is Emma, I'm the mother of Charlotte who has a form of Primordial Dwarfism.

I cannot thank the WWGF and its supporters enough for what they have done for us as a family. To know that there is an Organisation and family support network here in the UK means so much to us.

There has been many times when I thought we were alone, totally isolated as we had no one to turn to for support, advice and guidance, especially when Charlotte was ill.

When we attended the first WWGF convention it was a magical occasion for all of us. For the first in Charlotte's life and ours we found families similar to us. It was good to speak parents we could relate to and who had already experienced issues that we were starting to encounter (health, negativity, isolation).

Our other children had a wonderful time during the convention and made many new friends who they could relate to. It was the first time we had spent time away from home as a family. At times it was very emotional for my husband Scott and me. Charlotte has spent so much time in hospital and this means we do not have a lot of time together as a family.

More recently, the Foundation is helping to fund driving lessons for me, so that I can balance time with my other children when Charlotte is in hospital when she is ill or has to attend the many appointments, due to the many underlying medical problems she has.

The hospital is 15 miles from where we live; this means we are constantly paying for taxis to get me to the hospital and back, sometimes 3 times a day. Sometimes Charlotte's dad has to take time off work without pay to drive me to the hospital and back. If I pass my test I will be able to use the car myself. This will allow me the freedom to come and go, spend more time with my other children and just as important, transport Charlotte safely.

I cannot thank the WWGF enough for this, more so the supporters who donate money to the Foundation.

WWGF Note: Emma passed her test first time at the end of 2009! Her life has been totally transformed!

Emma (Charlotte's mum) - April 2009.

 

Our Aims

Hold a yearly international event to bring families together to celebrate life and allow them to meet experts from around the world.

Provide trips out and events during the annual convention and also breaks for families needing respite.

Source out and financially assist with specialist equipment, toys, custom made clothes, costumes and furniture.

Create opportunities to allow individuals affected by Primordial Dwarfism to reach their full potential in life.

Facilitate research into the causes of Primordial Dwarfism and the complex life threatening medical issues faced by individuals affected by Primordial Dwarfism.

Raise awareness amongst the general public, medical professions, support services and other interested parties.

Facilitate family support meetings and connections to highlight life issues, concerns and remove the isolation families feels.

Identify those with Primordial Dwarfism and bring them into contact with other individuals, families and specialists.