Family of young Portsmouth girl with rare condition look to help their daughter communicate
THE parents of a young Portsmouth girl with an extremely rare condition are fundraising for new equipment that they hope will help their daughter to communicate.
Alyssa-Mae England's parents are asking for donations so that they are able to buy her an IPad.
Alyssa suffers from a rare chromosome disorder called unbalanced translocation, which means some of her chromosomes have swapped but unequally.
In Alyssa's case, she is missing one of her chromosomes.
Her mum Zoe said: ‘Because our daughter is unable to communicate, trying to hold her attention is impossible.
‘It’s like having a baby at the moment because she can’t talk at all.’
In order to help with Alyssa’s engagement at school, she was provided with an iPad to use educational apps that are adaptable to her needs.
Zoe continues: ‘[The school], and I, realised that she had a lot more motivation when she was using technology, so a special technical guy at the school set up an iPad for her. It gave her the access to be able to swipe and learn.’
Zoe hopes that enough money will be raised in order for Alyssa to have the same opportunity at home, which will help the family to understand their daughter’s needs.
She said: ‘The school are hopeful that they might be able to get towards her pointing to things and indicating what she wants or how she’s feeling, so she can tell us if she’s sad or hungry or cold.’
She believes that this will have a major positive impact on the family.
‘To be able to do it at home will benefit her immensely, and that will better both her and our lives.’
‘If it enables her, then it will be a life-changer.’
The family have set up a gofundme page for donations, which can be found at https://www.gofundme.com/alyssa039s-chance-to-interact-with-the-world
Alyssa is thought to be the only girl in the world suffering with her condition, and is part of the rare chromosome register called Unique.
The genetic condition has previously brought on other health problems for Alyssa, who also has congenital heart disease, epilepsy and multiple urine infections.
Previous fundraising has raised more than £3,000 to provide Alyssa with a custom-made trike, and to turn her bedroom into a sensory room.