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Through the Rare Project we introduce you to the people behind their rare conditions.

Faith

Faith is an affectionate, fun, chatty, loving, warm 14 year old with a great sense of humour. 

"We’ve always encouraged Faith and tried our best to not treat her any differently than a ‘normal’ child. She attends mainstream school (with1:1 support). At a recent parents evening, her English teacher told us she has “never met such a caring, thoughtful soul” and another mentioned she “brings out the best in people”.   Her school report is literally covered in “A” for effort, we could not possibly ask for any more.

She has helped local vision charities at fun days and raised money with bag packs and took part in sponsored swims at school for national charities. In October 2015 she was awarded a rare Gold Blue Peter Badge for her citizenship."

Faith was born with a small deletion on the short arm of chromosome 11 known as WAGR syndrome. This genetic problem caused her to have the condition aniridia amongst other complications, glaucoma, cataracts and nystagmus (wobbly eyes) all forming to give a sight ratio of around 3/60 and recognized medically as severely visually impaired / blind.

The chromosome deletion also caused her to develop a tumor on her kidneys at 6 months old where she underwent chemotherapy and in the end had part of her kidney removed. The memory of her early years has always been tainted by this, all her baby and toddler photos of her show her with little or no hair and looking very poorly. I will never ever forget her pulling her own hair out during her chemo and looking at it and crying.  She spent the next 7 years in remission with ultrasounds every 3 months, we lived from ultrasound to ultrasound counting each one down and wishing away the 7 years.

Faith also has developmental co-ordination disorder (DCD), also known as dyspraxia, and is a condition affecting physical co-ordination that causes a child to perform less well than expected for his or her age in daily activities and appear to move clumsily.  Faith’s fine motor skills are also affected making writing almost impossible, tying shoe laces and doing up buttons also impossible.

Faith was born with a significant heart murmur and last year (2014) underwent keyhole surgery to close the hole in her heart.

Just weeks ago she had major 9 hour surgery to attempt to correct her progressive scoliosis with spinal rods and pins and is now immediately 2 inches taller and on the road to recovery and now able to walk pain free.

Before both operations Faith was not concerned for her own well being but was more concerned that Mom and Dad must not worry and that she would be fine!

Like most teenagers Faith loves music, audiobooks, games, television and cinema. She is very passionate (borderline obsessive) about who and what she likes. She loves vloggers on Youtube such as Zoella and Joe Sugg, Marvel films, Minecraft, X Factor, Jedward and Bars and Melody in particular.

She loves attending music concerts and loves to dance!

To learn more about Aniridia click here http://aniridia.org.uk/.

Find out about some of the other children taking part in the Rare Project by clicking here.

If you would like to learn more about The Rare Project or to take part please click here.

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