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'The miracle we've all been praying for' - joy as treatment approved

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Mum Sinead Perez with ‘happiest boy on the planet’ Jordan

Mum Sinead Perez with ‘happiest boy on the planet’ Jordan

Mum Sinead Perez with ‘happiest boy on the planet’ Jordan

A 12-year-old boy with a rare muscle wasting disease who got news that he will start treatment with the drug Spinraza next month, "is the happiest boy on the planet", according to his mother.

It is over a year since Spinraza was approved for use by the HSE but it was only this month that Sinead Perez was given a date for her son Jordan to start his treatment.

She previously described waiting for the date as "breaking my heart"; now she says it is "the miracle" they were waiting for.

Positive

Jordan, from Sixmilebridge, Co Clare, was born with spinal muscular atrophy (SMA) and Sinead said there have been very positive reports from children who have already begun their treatment with it.

"Spinraza is making such a remarkable difference to the other children and their families. One girl couldn't hold her hands up over her head for some time before receiving Spinraza and now she can.

"They are all doing so much better and gaining milestones everyday."

Jordan has been told that his treatment will begin on September 1 and Sinead said, "to say it's the best feeling is probably an understatement".

"I've been waiting for this moment for 11 years, since Jordan was diagnosed.

"Having a treatment like this so soon when we thought there was never going to be one, is something I cannot put into words except we can now plan our future not just for Jordan but for the whole family. It's the miracle we've prayed and waited for for so long."

"I'm nervous and excited for him. I'm anticipating a bit of discomfort for Jordan and how to control that (discomfort) for him."

"But most of all we're now looking forward to the future and all the wonderful things Jordan will once again be able to achieve and the new abilities and confidence he will gain from this treatment."

She said Jordan is thrilled and, "so excited at the prospect of what he will be able to do and that it's finally happening for him".

Excited

Jordan, who graduated from primary school this month, says he's "very happy, it will change my life completely, nothing will ever be the same and I'll be able to do so much more for myself. I'm so, so excited".

Sinead posted on her Facebook page: "After two long hard stressful years filled with many, many tears and many sleepless nights I'm so delighted to finally announce Jordan will start his life saving treatment Spinraza on September 1.

"We now can't wait for the future and all the fantastic things Jordan will be able to accomplish."