Imelda is taking part in the Super Sensory 1km challenge and is asking for sponsors to help fund her much needed therapy and equipment.
Imelda was born with a rare chromosome disorder. So rare in fact that she turns out to be unique. We have searched several data bases to try and find babies and children like her without success. As far as we know, there is no other child like her, she is very special.
In the last six months, Imelda has had around 60 medical appointments for various checks, follow ups and treatments. It has been extremely hard to watch her go through so much. We found it heartbreaking to listen to the growing list of health concerns often with a long agonising wait to find out the results. She has been exceptionally brave and takes everything in her stride. There have been so many tests to try and build up a picture of how Imelda will be affected by this unknown disorder. The best plan of care for her is to give Imelda a full “MOT” and investigate potential health problems. There are many healthcare professionals involved in her treatment including Geneticists, Neurologists, Orthopaedics, Paediatricians, Dieticians, Therapists, Consultants, Doctors and Nurses from Great Ormond Street Hospital, Broomfield Hospital and Braintree Community Hospital.
Her condition is largely an unknown one. What we do know is she has many traits similar to Cerebral Palsy. She has Hypotonia which is decreased muscle tone. This makes feeding and swallowing difficult, it also affects her moving around and it will make reaching her milestones very challenging. She is on a special high calorie diet to help increase her strength and make swallowing easier. She will need an operation on her hip, but we need her a little older and stronger so she manages better.
Through the fund we have managed to start therapy with Imelda and make a difference. We have just completed an intensive block of therapy at the Bobath Centre in East Finchley. This is an amazing centre with various therapists trained to help babies with Cerebral Palsy and neurological conditions.
We do lots of therapy every day to lessen the impact her condition will have on her life including therapy for sensory processing disorder. So, this super sensory 1km is a real challenge for her.
We are now doing two sessions a week at Kids Physio Works in Copford and Imelda is doing very well.
She has shown time and time again that she is a determined, strong willed and a fighter. We have every confidence in her that she will achieve what she wants to, as she is a bright little girl.
Donate to unique Imelda via:
Text MELD87 £5 to 70070