Monday 20 August 2018

'Help our little boy get the life he deserves to have' - Dublin couple need €500k for new drug to treat son (7)

Vincent Lyons (Image via GoFundMe)
Vincent Lyons (Image via GoFundMe)

Sean O'Grady

A Dublin couple are raising funds to purchase medication for their seven-year-old son Vincent who suffers from Duchenne muscular dystrophy (DMD).

DMD is a severe type of muscular dystrophy which causes muscle weakness in those afflicted, with most people unable to walk by age 12.

Alan Lyons and Vivien Colmey from Blanchardstown are raising money for their son to pay for a drug called Exondys 51 - Eteplirsen, which is currently unavailable in Europe.

"It's a life limiting disease that will take away Vincent's ability to walk. It will also lead to heart, chest and lung problems," said Vivien.

"This drug was approved in America last September, it hasn't yet gained European approval and we don't know exactly when that is going to be. 

"We know looking at Vincent now that he doesn't have a year to wait. They are going to sell it to us but unfortunately at a very high cost of €441,000 per year.

"To think that there is a drug there, and it is available and we just can't afford it... I just can't understand it, it breaks my heart every single minute of the day," said Alan.

"Help us and help our little boy get the life he deserves to have," Vivien added.

Alan and Vivien had planned on getting married this year but have postponed their plans to focus on caring for Vincent.

The couple will have to have the drug shipped from America to Ireland, while Temple Street Children's Hospital has agreed to administer it.

A host of celebrities have lent their support to Vincent and his family to raise the much-needed funds including Amanda Byram, Laura Whitmore, Nicky Byrne and the cast of Dancing With The Stars.

Singer Olly Murs also sent his support to Vincent, recording a video for his young fan.

The local community in Blanchardstown have also pledged their support to Vincent.

A fundraising event was held at the Crowne Plaza, Blanchardstown, hosted by the PTA of St Brigid's National School, Castleknock, where Vincent is in first class.

MC'd by 2fm presenter Bernard O'Shea, over €100,000 was raised last Saturday at the benefit to go towards Vincent's medical costs.

To learn more about Victory4Vincent and fundraising please visit victory4vincent.com and to donate please see their gofundme page.

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