|Posted by isabellasbigdreams on March 21, 2014 at 9:35 AM|
Firstly I would like to add that I absolutely HATE heights...EEK! But...
I am doing this skydive to raise money for two charities very close to my heart,
The first being the Child Growth Foundation UK who without their support, knowledge and research they do, Isabella would still be undiagnosed now.
It was through the CGF that I found support and information leading to a specialist in London who specialises in a very rare form of primordial dwarfism called Russell Silver Syndrome.
This is such a rare syndrome that my daughter has, that she is one of only 2 known children in Wales, UK that have RSS.
Without the CGF and the specialist I wouldn't have the support Isabella needs.
The CGF rely on fundraising to continue the work and research they do, so I am hoping people will join me and help me fundraise for this wonderful organisation.
They support not only RSS but other syndromes too, and host an annual convention where they have specialists who come and give advice, talks/workshops and answer any questions parents have.
It is also a wonderful time to meet with other parents who have children with the same syndrome as yours,
Isabella loves meeting other children who are small like her.
More information on the convention and all the CGF do is on their website.
UNIQUE is the leading charity providing specialist information and support to families coming to terms with a diagnosis and the medical professionals caring for them.
New technology means many more children than ever before are being diagnosed.
In the last year alone more than 1,000 parents approached us for help, straining our limited resources.
Without the donations and brilliant fundraising efforts of their members, supporters and friends,
they simply couldn’t go on providing our services to help anyone born with a rare chromosome disorder.
so your help is gratefully appreciated.
Please take a look at their website: