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.
“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 Mum 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 definitely loves to dance!
“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.”
FIND OUT MORE
WAGR SYNDROME
WAGR syndrome is a rare genetic condition that can affect both boys and girls. Babies born with WAGR syndrome often have eye problems, and are at high risk for developing certain types of cancer, and a range of developmental delays. The term “WAGR” stands for the first letters of the physical and mental problems associated with the condition:
(W)ilms’ Tumor, the most common form of kidney cancer in children.
(A)niridia, some or complete absence of the colored part of the eye, called the iris (singular), or irises/irides (plural).
(G)enitourinary problems, such as testicles that are not descended or hypospadias (abnormal location of the opening for urination) in boys, or genital or urinary problems inside the body in girls.
(R)ange of developmental delays.
Most people who have WAGR syndrome have two or more of these conditions. Also, people can have WAGR syndrome, but not have all of the above conditions.
To find out more about Wagr Syndrome, please click here.
To learn more about Aniridia, please click here.
INTERNATIONAL WAGR SYNDROME ASSOCIATION (IWSA)
IWSA’s mission, as found on their website:
“The mission of the International WAGR Syndrome Association is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives.”
The International WAGR Syndrome Association is a not-for-profit 501 (C)(3) charitable organisation comprised of a network of families, health care professionals, educators, and others who care for individuals with WAGR syndrome. Their members are located all over the world and membership is free. Funding for the organization comes from donations and grants, memorial donations, and fundraising activities led by member friends and families.
To find out more about IWSA and what they can do for you and your family, click here.
Source: https://wagr.org/3510-2/
aniridia network
We are a charity that supports people with rare genetic condition aniridia in UK and Ireland. Aniridia causes a lack of irises (the coloured ring) in the eyes and poor vision from birth. Since 2000 Aniridia Network has been helping people with aniridia as well as their families, doctors and teachers to be: hopeful, confident, supported and well informed about aniridia and related issues.
To find out more about the network, click here.
Source: https://aniridia.org.uk/
Don't forget to visit and 'Like' our Facebook page too so we can keep you up to date with our new rare stories by clicking here
