{"id":7352,"date":"2021-06-08T15:50:27","date_gmt":"2021-06-08T13:50:27","guid":{"rendered":"https:\/\/www.christchurchswindon.co.uk\/blog\/?p=7352"},"modified":"2021-06-27T12:59:57","modified_gmt":"2021-06-27T10:59:57","slug":"chris-runs-to-support-local-family","status":"publish","type":"post","link":"https:\/\/www.christchurchswindon.co.uk\/blog\/2021\/06\/chris-runs-to-support-local-family\/","title":{"rendered":"Chris runs to support local family"},"content":{"rendered":"

\"\"<\/a>On 19th June, Chris Smith, our Community Centre Development Manager ran 53 miles to raise funds for a local family, whose daughter suffers from Batten’s Disease. Addy is 5 years old. She’s amazing.<\/p>\n

She has been diagnosed with a rare, terminal disease known as CLN2 Batten’s Disease. There are presently only 100 children worldwide known to have this disease.<\/p>\n

Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.<\/p>\n

Following surgery, she will need to travel to Great Ormond Street Hospital to receive treatment every two weeks for the rest of her life, which may only be another 4-6 years. Heartbreakingly, the disease will limit her life to between early childhood and young adulthood at best.<\/p>\n

Listen to Chris explain the project in this interview with Shirley Ludford.<\/p>\n

\n<\/div>\n

You can read more about Addy’s needs and donate to Chris’s Just Giving fundraising page on the link below.<\/p>\n<\/div>

Donate to support Addy<\/span><\/a><\/div>

\u00a0<\/p>\n

The church was lit with orange lights on the 9th June to raise awareness of Battens Disease\u00a0 <\/p>\n<\/div>

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