Ava was born with ichthyosis, which is an extremely rare skin condition affecting very few children in the UK.  We didn't take any pictures of Ava at birth as it was too distressing for us to see her the way she looked. Luckily, she is one of the rare children in the UK who has self - healed. She still has ichthyosis on her scalp and when she is ill her skin changes and becomes painful to touch. She is classed as a 'self - healed collodion baby'.

Ava is taking part in a ten year clinical trial to see if doctors can identify the gene that causes this condition. It's very likely Ava, and possibly Amelie (her twin) will have children with this gene and they may not be as lucky. So, I am raising money to help fund research to identify the faulty gene and help future generations.

I bumped into two little girls when I was last at Great Ormond St hospital who weren't as lucky as Ava . I was very upset seeing those little girls and the impact this condition must have on their everyday life. There are lots of others whose daily lives are affected physically, emotionally and psychologically with this condition.

We know our lives would have been very different if Ava hadn't self - healed and we are very grateful for this. That's why I'd like to raise money for this great cause.

We will plan to do a variety of activities to raise money

Every £25 raised is equivalent to one hours research.

Inherited ichthyosis is caused by faulty copies of genes, which are passed on from one generation to the next. Each type of ichthyosis is due to a different genetic mutation and the pattern of inheritance varies. Therefore expert genetic advice will be needed by families with affected children.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.