Amelia (Nugget-chops) is lovely young girl, she is 9 years old. Amelia was diagnosed with a genetic disorder two years ago, although we knew that there was something wasn't quite right since she was a baby. Amelia had seizures from a young age but was officially diagnosed until she had a very bad seizure and she banged her forehead and cut it open so deep we could see her scull.
Nugget-chops has a number of diagnosis including epilepsy, fine and gross motor difficulties, sensory issues, social community cation difficulties, attention deficit disorder, learning delays and difficulties. Amelia also has sever memory problems. All the above mean that she struggles day to day with things as simple as getting dressed right to not being able to express herself when she is in any pain.
I could write for days and still not cover it all.
Despite this Amelia lives at home with her mum, dad, sister and two brothers along with her dog, rabbit, two chicken and a cockerel. Amelia attends mainstream school and receives 1:1 support. Amelia is always happy, caring, she is a polite little girl and will do anything to please anybody.
Recently we have turned towards private treatments as we were not making any progress with the statutory health care services. All this is comes at a cost. So far this year we have already paid for a private Occupational Therapist, Speech and Language and a Behavioural Optometrist. All of these come at a significant cost. The optometrist has found that Amelia has lots of difficulties with her eyes even though her eyesight is good. Amelia struggles to focus, track and this causes extreme pain for her by the end of the day. We now need to fund vision therapy which costs £100 per session and she has to go every week for a minimum of 12 weeks; given the extent of Amelia's difficulties this could go unto 24 weeks.
Amelia also has to go back to Essex in January for a further visit with the occupational therapist, who reassess her and prescribes her with further exercises and treatment, again all at a significant cost as we have to pay for the equipment too.
Despite the genetics team telling us that Amelia's mental health is at extreme risk, the local mental health team keep discharging her as they don't know where to send her as she doesn't fit in a box. We have been in contact with a few private mental health teams but we cannot afford the assessments.
We began trying to address Amelia's difficulties through the local NHS trust, however it became self evident as she grew older that due to the complexities of her needs that the overstretched NHS could no longer give her the time or resources to meet Amelia's daily living needs. In order to uncover some of the root causes of her needs and address them, we have unfortunately had to turn to the private sector, who have been able to gibe us the time, effort and resources to meet Amelia's specific needs.