Simonr

About Me

My daughter is 10 years old and has Cerebral Palsy, and as a result, has complex needs. She was born in Singapore at 25 weeks and was very unlucky to contract meningitis when she was born. She was in neonatal intensive care for 4 1/2 months.

My daughter has had hydrocephalus from an early age because of her meningitis and as a result has shunts. She's had approximately 14 shunt revisions due to blockages or infections. She has a history of seizures and is on medication and CBD oils to control them.

Since Feb 2017 she lost the ability to eat and drink and now has a PEG. She has oral tasters but all her nutrition comes from a blended diet.

Due to her prematurity, her vision has been greatly affected and is blind in her right eye and has been classified as severely sight impaired in her left. We hope over time, with the right focus, this will improve.

She is a very happy little girl but suffers from severe developmental delays in all that she does. She cannot walk, talk, roll or sit up. She has intermittent head control but is always willing to work hard. With the right approach and support, she can come on leaps and bounds.

I follow the 9 essentials for her development as covered in the book ‘Kids Beyond limits’ by Anat Baniel.

She is at school 5 days a week at Linden Lodge, Southfields.

in summary my daughter has:
- Cerebral palsy
- Hydrocephalus
- Epilepsy seizures (tonic clonic, focal)
- PEG fed
- Global developmental delay
- Vision impairment
- Stridor
- Sleep apnoea