This last week has been the most painful of my life. We began with the ending of the STX209 trial, worsened with the news that Grampy (Eric’s grandfather, who lives downstairs) had broken two vertebra in his back during a fall…a fall he took when we were visiting Eric’s mother, who is recovering from her second hip replacement surgery, and father, who is recovering from a serious work accident that is threatening to take his vision. And then…and then.
To say we are full up on worry and stress and sorrow is quite the understatement.
I cannot reverse my grandfather’s death. I cannot heal Grampy’s back or Patricia’s hip. I cannot save Frank’s eyesight. I accept reality and my own limitations. But do not say there is nothing I can do about this drug trial ending. Do not look at me and tell me I must accept it and move forward. Do not tell me to hope there is something better to come because I have two words for anyone who tries.
I may not win, I expect the odds of me winning are very slim indeed…but of all the things weighing me down and being taken from me…my son is not one I will let go of quietly. I had hoped that someone with a bigger voice than mine would speak up and support the parents who are crying out for help. I had hoped that people with more connections than I would use them to help our children. I have been let down. Hard.
I am literally vibrating with anger as I sit here and watch mother after mother cry out for someone, anyone, to listen…to stop this…to find a way to give our children the medicine they need…only to be ignored. I cry when I read their desperate words, two days into the titration…four days into the titration…and their kids are falling apart. Their lives are falling apart.
There are those who say we put our trust in people who didn’t deserve it, who didn’t have the resources to follow through. I say, they are wrong. I trusted the only people who were even trying to help us, who actually succeeded in helping us and I won’t ever regret it. Seaside Therapeutics tried to do something that they admitted from the beginning might be impossible. They developed a drug based on a theory that was made after a serendipitous encounter at a conference. They entered the Goliath world of pharmaceuticals as the David of the fragile X community.
And they failed.
I don’t care why, not really. Telling me how every penny over the last two years was spent will not replace the pit in my stomach with relief in my heart. It will not deliver Arbaclofen magically to my house. No explanation will make me accept that this is OK. It’s not.
This is not OK.
I, along with the other moms, will continue to reach out to our media connections…we will continue to call our political representatives…we will continue circulating petitions. We will use our voices to fight for the most precious treasure in our world, our kids.
Some fear that this is going to mean fewer people will participate in the drug trials. I think they are right to be worried. This isn’t just about my son getting screwed over by the process, though that is what hurts me the most. It’s about a few hundred kids getting screwed over…it’s about families having their hearts broken in full view of the entire community. In full view of those who I have been trying to convince to participate in a trial. In full view of those who suspected what I have now learned…that this process isn’t about the kids…it’s about the dollars.
So before you ask me to stop speaking up. Before you ask me to trust that Roche or Novartis or any of the other companies out there will do better by us. Promise me this…if I pick myself up, glue the shards of my heart back together and trust again…tell me they won’t fail me too.
PROMISE ME they won’t ever look at the bottom line again and decide that, in the cost/benefit analysis, my son, my heart, my community, isn’t worth the dollars it will take to get a medication that works on the market.