Anne Twist helps child with rare condition get funds for treatment
December 20, 2016: Anne Twist, mum to Harry Styles, has a significant number of active followers on her social media accounts that share what she tweets, giving her a large social platform with significant reach. Anne has helped support individuals, many times seriously ill children, in just this way. Recently, Anne has given her support by sharing the story of a young 7 year old boy named Ethan Box who has a rare condition called Hypothalamic Hamartoma characterized by epileptic seizures among other symptoms.
It is crucial that Ethan gets the funds for the treatment he needs as this disorder has a high percentage of curability if treated in a timely manner. So getting the word out about Ethan’s justgiving page was essential. Unfortunately, the treatment that Ethan needs is not available nor is it covered by the NHS in the UK, leaving his family to raise the funds to take their son to the US to get treatment. Timing for this treatment right now is crucial for the highest chance of success at this stage of Ethan’s age and development. Since his diagnosis in October 2014, Hypothalamic Harmartoma has caused Ethan to suffer daily with a variety of epileptic seizures, between 15-25 a day. Complicating his condition is a recent diagnosis of Autism, ADHD, and ODD; all linked to Hypothalamic Harmartoma. The frequency and severity of Ethan’s daily seizures make these much conditions worse.
Below is a short video (credited to/shared from ITV London ) about Ethan’s daily battle with his condition:
Now that Ethan’s justgiving account has recieved the attention to raise the initial goal amount for his treatment abroad, there is still funds needed after his treatments with on-going follow up procedures and his trip to and from the US. These funds will hopefully be raised through a fundraiser concert called Smile4Nathan .
Nathan’s family have been touched by the support they have received. His mum, Sharon Box posted this message on Ethan’s justgiving page today expressing their thanks: