suzy marsh
Flo's Page
Fundraising for Albinism Fellowship
Story
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I am raising money for the Albinism fellowship because when my beautiful granddaughter Florence was born she was diagnosed with Albinism, a very rare genetic condition. There are different types of the condition with associated degrees of severity. What we know so far is that Flo has type 1 occulocutaneous Albinism (OCA), this affects the pigment in her hair, eyes and skin. We are aware that sight is usually affected and sensitivity to light is experienced. Skin is very prone to burning too so extra precaution in sunlight is required. The reason for this is that people with OCA do not or produce very little t melanin.
We are on a journey as a family and have been experiencing a whirlwind of emotions, Albinism never crossed our mind when we were waiting with excitement on the birth of Florence. We were in total shock and distress initially with no one who specialises in this condition to talk to or an understanding of how this will affect Florence in the future. We still don't know how her vision is affected other than she is very sensitive to light. In fact she had just had her first pair of sunglasses prescribed at 4 weeks old. We have been told that she will probably have a visual impairment, the severity of that maybe a bit clearer about 6 months to 2 years old.
We discovered the Albinism Fellowship, just reading there website was so helpful to us. It allowed us not to feel alone, there is so much information on there about the condition, support available , conferences and networking. It is overseen by volunteers who do not get paid at all for there time or have an office to work out of.
Discovering the fellowship and how comforting this was for us, I decided I would like to give something back and show my appreciation so that the hard work within the fellowship can continue and grow. I am very thankful to my work colleague/friend Sue who is running the Great South Run with me , for the support and encouragement from my boyfriend, family members and most of all beautiful Flo.
I would also like to say to Danielle (my daughter) and Jim (Florence's mummy and daddy) how proud I am of them both. You have had good days and bad days but your strength is amazing and most of all your not alone.
Thank you for your kind donation and support
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.
I am raising money for the Albinism fellowship because when my beautiful granddaughter Florence was born she was diagnosed with Albinism, a very rare genetic condition. There are different types of the condition with associated degrees of severity. What we know so far is that Flo has type 1 occulocutaneous Albinism (OCA), this affects the pigment in her hair, eyes and skin. We are aware that sight is usually affected and sensitivity to light is experienced. Skin is very prone to burning too so extra precaution in sunlight is required. The reason for this is that people with OCA do not or produce very little t melanin.
We are on a journey as a family and have been experiencing a whirlwind of emotions, Albinism never crossed our mind when we were waiting with excitement on the birth of Florence. We were in total shock and distress initially with no one who specialises in this condition to talk to or an understanding of how this will affect Florence in the future. We still don't know how her vision is affected other than she is very sensitive to light. In fact she had just had her first pair of sunglasses prescribed at 4 weeks old. We have been told that she will probably have a visual impairment, the severity of that maybe a bit clearer about 6 months to 2 years old.
We discovered the Albinism Fellowship, just reading there website was so helpful to us. It allowed us not to feel alone, there is so much information on there about the condition, support available , conferences and networking. It is overseen by volunteers who do not get paid at all for there time or have an office to work out of.
Discovering the fellowship and how comforting this was for us, I decided I would like to give something back and show my appreciation so that the hard work within the fellowship can continue and grow. I am very thankful to my work colleague/friend Sue who is running the Great South Run with me , for the support and encouragement from my boyfriend, family members and most of all beautiful Flo.
I would also like to say to Danielle (my daughter) and Jim (Florence's mummy and daddy) how proud I am of them both. You have had good days and bad days but your strength is amazing and most of all your not alone.
Thank you for your kind donation and support