Dear Family and Friends

Thank you for visiting our fundraising page.

Elliot and I will both be taking part in The Walk for Skin on 31 May, which is a 3-mile walk through Southampton Common.  This event is held bi-annually by the British Skin Foundation, to help raise money and awareness for a variety of skin diseases and associated charities. http://www.britishskinfoundation.org.uk/standard.aspx?id=2360

As many of you know, Elliot was born with poor skin that is characterised by brown plate-like scales.  This skin condition is known as 'Ichthyosis'.  More recently, we have been toGreat Ormond Street Childrens Hospital and the specialists there have confirmed that Elliot has Lamellar Ichthyosis.

Lamellar Ichthyosis is a very rare condition caused by genetic abnormalities that affect normal skin shedding.  It is not catching or contagious but it is a life-long condition and currently no cure available.  Elliot has to be treated with ointments and eye drops several times a day to keep his skin moisturised and prevent it from drying out.  He also has to have a change of clothes after every application of ointment because the skin is constantly shedding and causes irritation.  Other complications associated with Lamellar Ichthyosis can extend to over heating because severe scaling of the skin prevents normal sweating, difficulty in movement where the skin is tight and cracks form, patchy loss of hair and hostility towards sufferers because of the difference in physical appearance. 

Due to the rarity of the condition, very little information about it is available.  For Lamellar Ichthyosis, the occurrence rate is around 1 in every 600,000 babies and therefore there are very few families in the UK affected by this.

Ichthyosis Support Group http://www.ichthyosis.org.uk  has given us support through the help and advice they have provided and the opportunity to communicate with other families affected by Ichthyosis in both the UK and overseas.  This has been a tremendous aid to Richard and I and has helped us to feel that we are not alone in managing Elliot's condition.

Please help us to raise awareness and money for Ichthyosis Support Group, in order to fund further research into the cause and future treatments for Ichthyosis sufferers by sponsoring us in The Walk for Skin.  Donating through Justgiving is quick, easy and totally secure, it is also the most efficient way to sponsor me: Ichthyosis Support Group gets your money faster and, if you are ataxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

Thank you for your support.

Amanda & Elliot x

Further information about Ichthyosis and Lamellar Ichthyosis is available on the following websites: 

http://www.projectsaveourskin.org/about_ichthyosis.htm