Hi there,
Thank you for taking the time to meet our wee girl and find out why we want to raise so much money for Dermatology Research for Vascular abnormalities at (GOSH) .
It is not about just asking for money particularly for Bethan-May’s condition but for Dermatology Research at GOSH. They net-work world wide in order to have the funds to learn more about Glomuvenous Malformations (GVM) and many other vascular abnormalities which will help them treat Bethan-May and find the way forward to stop progression and enhance her quality of life.
Bethan-May was born with a very rare skin condition. In March 2002 she was diagnosed with Glomuvenous Malformations GVM. She was the first for GOSH, which also meant the first in the . Since then they have diagnosed 14 other children. GVM has many presentations and for Bethan-May she is ticking a lot of the boxes. When born she had 25% coverage now at the age 10yrs she has 75% coverage. Her skin has purple vascular lesions (they look a bit like varicose veins with purple markings) from head to toe. These make skin temperature control difficult, pain and discomfort is what she has experienced since birth and increases with progression of GVM.
Bethan-May has had many treatments over the years from Laser to Medical. Unfortunately GVM Lesions have developed behind her eyes, which are of great concern. Hence Bethan-May under went a course of Oral Chemo from January 2008 to the end of April 2009. This was yet again a first for a GVM patient but we are hoping it will give some management till research can give more answers and control. Bethan-May had biopsies taken in July 2009 and we now await the next step in her drug therapy.
Our Dermatology team at Gosh are truly amazing, from their determination, dedication, support & constant drive to net-work worldwide, share & learn from others about GVM.
We started doing fundraising in 2006 for GOSH and raised almost £4000.00. In 2008 we decided to raise pounds directly for Dermatology Research. If you can help in any way we will be extremely grateful.
More information will be found on the website which is near its completion i.e. www.livingwithgvm.co.uk
Many thanks from the Slater family
Jacqui Tim Bethan-May and Billy
