SHE NEEDS THERAPY IN USA
A TODDLER battling a rare chromosome disorder needs life-changing treatment in the States.
Penelope Vasil has a condition that causes her to suffer from weak muscles, developmental and speech delays and a learning disability.
The three-year-old’s only hope lies in £12,000 intensive therapy in the US as similar treatment is not available in the UK.
Her desperate parents Stella Tikkirou and George Vasil have so far raised almost £10,000 to fund her care.
Stella, a full-time carer from Kingston-upon-Thames, south-west London, said: “It is so rare that the doctors cannot give us a prognosis so we just shower her in love and therapy and take each day as it comes.
“It’s heart-breaking really – we manage about 30 minutes a day in a standing frame but Penelope is now three years old and cannot transition from lying down to sitting up.
“She cannot crawl, cannot walk and gets tired very quickly.”
Penelope has part of her brain missing, which affects her coordination and senses.
It means she doesn’t produce enough melatonin so she struggles to sleep. Her heart and her spine are also weak.
Stella added: “She is cognitively more advanced than physically, so she can get very upset and frustrated when watching other children run around and play.
“She also cannot feed herself and because she is non-verbal she cannot tell us when she is thirsty, hungry or in pain.
“Above all this, Penelope is a bright, happy, loving, sociable little girl who just wants to be able to play like her friends and talk to everyone she meets.
“She is very stubborn so I am determined the therapy available at the centre could be all she needs to get moving and if not, at least we know we tried and have given her every opportunity possible to better her quality of life.”
Penelope attends speech and language therapy, occupational therapy and physiotherapy once a week.
But the treatment available at the centre in the US could make a huge difference to her future.
At the centre in Boston, Massachusetts, Penelope will spend two hours a day having brain therapy. It helps to create new patterns of movement in the brain by supporting and manipulating the body at the same time.
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