I have set myself this challenge to raise much needed funds for this fantastic charity and a wonderful little girl Orlaith.
The money raised will be split 50/50 between the charity NICE and any equipment, adaptations or all round quality of life improvements for Orlaith and her family.
Orlaiths Mom Caroline has written a few words to explain her experience of Orlaiths diagnosis and the support she has received from NICE.
“Orlaiths development checks confirmed that she was delayed in achieving her gross motor skills and a referral was made to Birmingham children's hospital. The consultant explained that she had severe hypotonia (low muscle tone). Hypotonia itself is not a diagnosis and is often said to be a symptom of an underlying condition. We began some tests to identify the cause of her hypotonia including MRI, EEG, bloods, lumbar puncture and muscle and skin biopsy but to date none of these have identified a cause.
Her low muscle tone has affected her achievement of gross and fine motor milestones it has also delayed her speech and language skills and the weaning process due to a weakness in her swallow.
Orlaith has weekly sessions of conductive education, with this support she is beginning to make progress and build muscle strength. The next goal we are working on is being able to sit unassisted”.
Conductive Education is based on a concept that everyone has the capability to learn and develop irrespective of starting point. Conductors are highly trained to observe this potential in a person; to nurture their development and devise structured programmes.
NICE need to raise £600k to enable them to provide much needed services. Through donating you can give someone like Orlaith the chance to start the process of overcoming the challenges they face every day.
So here is the challenge #OrlOrNothing
Stratford Upon Avon Half Marathon
Gloucester Half Marathon
Full Tough Mudder South West
Bristol Half Marathon
Birmingham Half Marathon
Venice Full Marathon