Kates Do it for Dan and Rapunzel Haircut
Donation protected
Hi all,
Kate has grown her hair for a number of years for the Rapunzel Foundation. She has decided that her hair will be donated to the Rapunzel Foundation, a charity who work to provide wigs to Alopecia sufferers throughout Ireland and funds will be donated to a little boy called Dan Donoher from Ballybrittas who needs a life saving drug in America. Clare from CoCo Hair Salon in Stradbally will cut Kate's hair when her Salon is back open.
Dan was almost 1 years old and when he was diagnosed on the 6th December with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. Dan has a deletion of the Survival Motor Neuron 1 gene (SMN 1).
The life expectancy of an SMA type 1 child is 18-24 months. A ground breaking treatment called Zolgensma, which is currently only available in USA and costs 2.1 million dollars for a once off infusion can save Dan’s life. Studies show that Zolgensma can substantially improve quality of life and survival of this horrific disease. Zolgensma is gene therapy and can only be given to kids under the age of two who meet the necessary health requirements. Dan currently meets these requirements but him and his family are against the clock.
All of the money raised during our fundraiser will go to helping Dan and his family reach their goal to receive this life saving treatment.
We appreciate that this is a difficult time at the moment for a lot of people with the Covid-19 pandemic at large but we want to appeal to everyone to give what you can to this great cause. No donation is too small.
Kate has grown her hair for a number of years for the Rapunzel Foundation. She has decided that her hair will be donated to the Rapunzel Foundation, a charity who work to provide wigs to Alopecia sufferers throughout Ireland and funds will be donated to a little boy called Dan Donoher from Ballybrittas who needs a life saving drug in America. Clare from CoCo Hair Salon in Stradbally will cut Kate's hair when her Salon is back open.
Dan was almost 1 years old and when he was diagnosed on the 6th December with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. Dan has a deletion of the Survival Motor Neuron 1 gene (SMN 1).
The life expectancy of an SMA type 1 child is 18-24 months. A ground breaking treatment called Zolgensma, which is currently only available in USA and costs 2.1 million dollars for a once off infusion can save Dan’s life. Studies show that Zolgensma can substantially improve quality of life and survival of this horrific disease. Zolgensma is gene therapy and can only be given to kids under the age of two who meet the necessary health requirements. Dan currently meets these requirements but him and his family are against the clock.
All of the money raised during our fundraiser will go to helping Dan and his family reach their goal to receive this life saving treatment.
We appreciate that this is a difficult time at the moment for a lot of people with the Covid-19 pandemic at large but we want to appeal to everyone to give what you can to this great cause. No donation is too small.