Classmates of Addy Clarke put their best feet forward by doing a mile-long run around their school field to raise money for the charity that is supporting her family. The five-year-old, diagnosed with Batten Disease last year, joined other reception children at Grange Infant School in Stratton in the challenge organised by head teacher Ellie Rushen-Gough to raise awareness of the condition and money for the Batten Disease Family Association. Mum Hayley said: “They wanted to do more even though Ellie has enough on her plate. Addy s disease is constantly changing which is demanding on the school, but they adapt to the changes and make us feel it’s not an issue for them.”
THE SSE Hydro will be lit up orange tonight. As part of International Batten Disease Awareness Day, the Glasgow venue will be helping bring attention to the disease, which can cause vision loss, progressive motor and cognitive decline, and seizures. Other Scottish landmarks taking part with lighting up orange include Edinburgh Castle, and the Glasgow Science Centre. The Scottish Government buildings at Victoria Quay and St Andrews House will also light up orange tonight to help raise awareness of the cruel disease. The Batten Disease Family Association is asking people to wear something orange and if you are out and about to please share your pictures of the landmarks lit orange across social media with #battenday2021 and tag the Batten Disease Family Association.
Like a punch in the stomach , is how Megan Willis felt on hearing that her eight-week-old baby with partner John Hall had a life-limiting muscle-wasting disease. It was devastating almost too much, too painful to process, says Megan, 29, an events manager, who lives with John, 36, a retail manager, in Colchester, Essex.
Little Edward has the genetic condition spinal muscular atrophy (SMA), in which the lack of a protein called SMN, vital for muscle development and movement, results in progressively weaker muscles.
Until three years ago there was no treatment and babies affected by Type 1 the most severe form gradually lost the use of their muscles before dying, usually before age two as a result of breathing problems caused by weak chest muscles.