Weʼve raised £200 to Help raise money to bring together and support families who are affected by the rare genetic disorder; 48 XXYY.
- Penarth, United Kingdom
- Disability support
- Time left
- Funded on Friday, 22nd September 2017
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48 XXYY support group helps put families together who are affected by this disorder. We are run on donations and all money raised is used to arrange days out and family get-togethers. It also includes the costs of bringing in experts from the US. This helps them in their studies, and this in turn raises more awareness for our medical professionals in the UK, whilst providing much needed support for the group.
48 XXYY is a chromosome anomaly that affects a very small percentage of boys globally and whilst our counterparts in the US have been studying this for a number of years and have amassed a substantial body of knowledge on the condition, leading the medical and social studies, in the UK the condition is relatively unknown, un-diagnosed and most importantly unsupported. We hope to change all of that or at least bring hope to those at the beginning of their journey.
Boys normally have 46 chromosomes in each of their cells, but boys with 48 XXYY syndrome have an extra X and and extra Y chromosome. The condition affects 1 in 18, 000 to 50, 000 boys. Each child has a different range of the symptoms listed below.
Physical symptoms include tall stature for their age, hand tremor, leg ulcers, elbow abnormalities, curvature of the little finger (known as clindactyly), stretchy joints (known as hyper-mobility), curvature of the spine (known as scoliosis), significant dental problems, flat feet, low muscle one, and low or no testosterone. Young children may be slow to crawl or walk or have difficulty picking things up.
Neurological and mental symptoms include developmental delays, speech impairment, behavioural issues, social communication disorders, anxiety disorders, depression, learning disability, mood swings, outbursts, and autism spectrum disorders.
Updates appear here
Alice Gwatkin started crowdfunding
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Sep 17, 2017
Sep 16, 2017
Aug 26, 2017
Aug 25, 2017
Thank you so much for supporting our boys😘
Aug 25, 2017
Go Alice! This is such a good cause and I know you're going to smash it!
Aug 25, 2017
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About the fundraiser
Penarth, United Kingdom
Raising money for the XXYY support group is important to me because I have a family member with the condition. The support group provides a sense of hope and inspiration, and everyone there understands, accepts and values each of the individuals with XXYY.
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