Hi this little one is Florence she’s a little sweetheart. She was born with a flash of white hair and at 3 months old, after my sister noticed something wrong with her eyes, we had a ton of tests which concluded she had albinism. Along with pale hair and skin due to lack of melanin, she also has something called nystagmus which is where her eyes are constantly moving from side to side in small rapid movements. Everyone with albinism has this, it’s part and parcel of the condition. 

What it means for her is that she will never be able to see in focus. Her vision isn’t wobbly to her, it’s just really blurred. There is nothing we can do to make it better, she’ll never be able to see clearly, she won’t ever be able drive. 

Albinism is quite a rare condition 1 in 20,000 people have it, it happens because me and her dad both have a rare gene which when collided have a 1 in 4 chance of making little albinos! 

She doesn’t let it hold her back, she’s a soft, gentle, adventurous little sprite but the older she gets the more conscious she’s becoming of having wobbly eyes and it breaks my heart a little bit that we can’t ever change that.... coming to my point! My sister, brother and I would love to raise some money for the Nystagmus Network, an organisation that supports kids and grown ups with this condition and who really importantly support research into nystagmus in the hope of finding a cure. We've decided to run / cycle 100 miles each in 30 days which might not sound a lot, but for me is a mighty challenge! I absolutely hate running it’s the worst, and I’m totally crap at it too. 

I know it’s a difficult time financially for loads of us but if you could spare a little I’d be so so grateful. Hopefully one day we can find a cure and she’ll be able to see perfectly for the first time ever 🤍 

🙏🏼 love Milly, Zoe & Toby x x x

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