Nicole is 7 years old and from Guildford. She has a muscle wasting disease called congenital myopathy which is a rare type of Muscular Dystrophy. This condition weakens her muscles including the heart and respiratory system with an average life expectancy of 16years.
Nicole needs ongoing funding help towards her weekly therapies as she grows and the condition deteriorates her strength and health. She also needs specialist equipment to be able to play sports and keep active.
Nicole is able to take a few steps with help of walking sticks and walker but relies heavily on her power wheelchair. Her spine has collapsed due to her weak core muscles so she wears a spinal brace. She is due a major spinal operation once she stopped growing. Her knees and ankles are very weak and severely hyper mobile which causes her to fall frequently. Nicole also has weak arms which is affecting her ability to raise her arms so she finds brushing her hair and teeth very challenging.
NHS isn’t providing any therapies at the moment so all the physio and hydrotherapy sessions are private paid by me which is very expensive.
With all her obstacles Nicole faces daily she still remains a feisty determined little girl with zest for life and a smile on her face.
