Marfans Syndrome Mummy

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My eldest daughter experienced problems at a very young age (6mths), her iris moved rapidly when she turned her head while playing. I contacted our GP and our journey began . . . . 

Sight Tests,

Opthalmology Appointments,

Consultant Appointments,

Genetic Councelling,

Meetings with her School,

At the age of 2yrs she was diagnosed with Ectopia Lentis.

Now at the age of 10yrs she is experiencing sight problems which have been investigated. Her sight has got worse slowly & this year was registered partially sighted. 

With support from her family, school & Health professionals she is developing & learning.

Vision support services are vital during school terms in order to support her in learning & to support her teachers. An individual Health Care Plan is also vital in meeting her needs. This is reviewed regularly & may be reviewed more frequently after a change ie: recent surgery.

Socially she has faced a lot of ignorance and stigma re: wearing high prescription glasses. This has impacted upon her self esteem & confidence. 

BULLYING is a difficult barrier to overcome during school years. Support/Resources are available on line for parents seeking advice.