Weʼre raising £800 to Help children and parents of children with Russell-Silver Syndrome (RSS)(SRS) in the UK. The disorder is caused by very rare genetic defects
- London, UK
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RSS/SRS SYNDROME is an extremely rare and severe type of primordial dwarfism.
This syndrome has a daily impact on not only the children affected but the parents. RSS comes with Physical and Internal defects that require a lifelong process of corrective procedures.
There are only 6 known cases in the UK, one of which is a Family member of mine.
Little is known about RSS but the implications are as follows;
Limb-length differences or scoliosis, growth hormones adminstered from 2 years Old to their Late teens. Feeding problems with low muscle tone and a striking lack of subcutaneous fat . Hypoglycemia is highly common combined with excessive sweating, greyness or pallor of the skin and a blue tinge to the whites of the eyes. Head circumference may be of a normal size which is then disproportionate to a small body size . Wide and late-closing fontanelle , body asymmetry with continued poor growth. Precocious puberty is a factor Gastroesophageal reflux disease .
I am fundraising towards more research/ diagnostic testing and more fetal testing for Genetic Disorders such as RSS
I am hoping a small portion of the money donated can go towards arranging a FUN day out for the parents and children in the UK to meet each other and share their tips/experiences and general support and for the kids to interact and know they are not alone in their journey.
Thank you in advance to all who donate.
Thinking of all those affected
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Siobhan McCreanor started crowdfunding