Natasha Newsome Drennan (Carlow-Kilkenny, Sinn Fein) | Oireachtas source

I raise the case of a young William Jonathan Moore, a four-year-old boy from Kilkenny who has been diagnosed with a life-threatening condition, Duchenne muscular dystrophy, DMD. This condition is so rare that no treatment is available in Ireland. William has been accepted at the Boston Children's Hospital for treatment. However, as I am sure the Taoiseach is aware, the treatment abroad scheme does not currently cover the United States. The State has a duty to provide care to children such as William to be treated in Ireland or abroad. At the moment, William's future is dependent on the goodwill of the public via a GoFundMe page for treatment and local fundraisers. We have had bespoke arrangements in the past for children with rare conditions, where the only treatment options were in the United States. I am asking that the Minister for Health engages with the HSE and William's family to ensure that they are supported to get the treatment and that the Department works to develop support for any future cases of DMD.

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