This is Imelda from Braintree in Essex. She was born with a rare chromosome disorder. It’s so rare it doesn’t have a name. In fact, she’s unique.
In her first 13 weeks of life Imelda had 27 trips to hospital with 2 admissions.
She was born with many abnormalities including Hypotonia. She has also developed seizures. Specialists at Great Ormand Street and Broomfield Hospital are looking at her brain, heart, kidneys & eyes because these organs can be affected. There are no words to describe how heartbreaking this journey is.
Her chromosome disorder can’t be cured and specialists can’t predict what the future holds, however they tell us to expect growth and development delays.
Our aim is to reduce the effects of this on her life with varied physical and occupational therapy with additional aids. She will need a special buggy, car seat and chair. This isn’t available via the NHS.
Just 1 hour of therapy per week before she is 3 will cost approximately £13,000.
Therapy can have an acute impact before she is three. Scientific evidence strongly suggests that a child’s success is significantly determined in the first three years of life. Therapy could be the difference between her being able to walk and talk normally and live independently or not. This is because of an excess of channels (synapses) in the brain that are especially responsive to external input. Synapses that are not used remain weak and are more likely to be eliminated after 3 years of age therefore the opportunity is lost. Please see here for further reading.
Please help Just4Children to help Imelda reach her full potential.