Friday the 4th of October will be remembered for a very long time. It was the day that ended 2 and a 1/2 years of campaigning and fighting for access to Spinraza for Sam.
On what was a very emotional day, Sam and his family entered the hospital At 7:45 a.m. This was the day that Sam and his family had been dreaming about. At around 10:30 that morning Sam received his 1st injection of Spinraza. After all the pre checks and a little bit of numbing cream on Sam’s back he went down to theatre with his mum and dad who were excited, nervous and happy all rolled into one. Only 1 parent was allowed into the theatre when the drug was being administered, and Sam had chosen to bring in his mum. They got sam into position and felt where the needle would enter. Sam was playing on his Switch to distract him and was even allowed to wear his headphones.
As the the needle entered, Sam let out an “ouch” but then after that was fine. Within minutes the procedure was over and Sam was lying in bed in recovery. What we had waited for, for over 2 years, was over in minutes. Spinraza was now inside Sam’s body, and no one can take it away from him. This is the end of one chapter and the beginning of another.
I have to say that Sam was very relaxed the whole day, and this was thanks to such a great team at the RVI in Newcastle and also to the team who carried out his pre-assessment the week before. They could see that he was a bit anxious, and Sam has a little fear of aneathnatists after having his peg fitted 3 years ago. They invited Sam to have a look around the ward and the theatres and the anaesthetic suite. This made Sam feel so much better about what was to follow and he even said to me that evening that the tour had really helped his nerves.
As you can see from the clip, we had Katie Cole from ITV Tyne Tees News, who have followed Sam’s story from beginning to end. Katie was so good with us as a family and Sam, and her news reports have also raised awareness of the condition itself.
Sam will now receive his next 4 loading doses over the next 6 weeks, and I’m sure that those 3 visits will go as smoothly as this one did.
My son is my hero, be is a fighter, and has been at the forefront of the TreatSMA protests in Manchester and the 2 campaigns, #wearyourhurt and #eggonyourface. Sam has also had his trademark sign at all of the protests which reads “Spinraza would enable me to lift my sign”, hopefully not too long in the future, we hope to be able to see Sam lift that sign. What a day that would be.
