Imelda is 15 months old and in her short life time she has had countless hospital visits and admissions. She was born with a rare chromosome disorder, so rare Imelda is unique.
She is under the care of many teams and consultants at Great Ormond Street Hospital. Her chromosome disorder can not be cured and specialists can’t predict what the future holds. This last year it has become very apparent that Imelda will need therapy and equipment throughout her childhood. A year ago we didn’t know much about her conditions and we are still finding out more. We didn’t know what we were facing and to be honest we still don’t know what’s ahead. We do know though, that she will need lots of help for many life long conditions she has.
These conditions such as her decreased muscle tone, Dyskinesia (movement disorder), Progressive Infantile Scoliosis are life long and Imelda will with help have to learn to manage with them. The best way to help Imelda manage is showing her how with therapy and equipment.
Along side this Imelda copes with her kidney condition, vision and hearing impairments. We hope these will be managed and improve with time and therapy.
This is the crucial part. Imelda has development delay. An MRI scan proved this was the case and found that there was no damage. With this knowledge and the latest scientific research we feel as much therapy and early intervention Imelda can have the more channels and pathways Imelda will be able to make in her brain. In turn, encouraging her development to her full potential.
We know so much more about the therapy available to help her and as she gets older, more will be on offer. Just an hour of Phsyio and Occupational therapy a week is £7,300 a year. This figure doesn’t cover all of the other block therapies like the Bobath Centre, Hydro Therapy and the equipment Imelda needs to gain independence.
Imelda has come so far and we will not ever stop trying to help her reach her full potential and do our best for her. Please keep supporting and following her story and tell people about this amazing determined little girl that knows NO limits and continues to try her best all of the time.