Never has time gone faster. Never have I wanted it more to slow down. Every month I get a booklet that marks all the developments of your child. Every time I am confronted with all the things Pia should be able to do at her age, and wants to do so much, but just can’t. It hurts to see old pictures of Briek at the same age. It hurts to see other kids of Pia’s age. But there are also silver linings : the treatment with Spinraza is working. There are already little improvements noticeable since she’s been receiving the injections and every time her physiotherapist says she’s making improvement, I get tears in my eyes. We set new milestones: the first time she really moves her legs by herself, curls her toes and stretches them, grabs something with her hands with power. We are so enjoyed with the fact she is such a happy baby: everyone who looks at her, gets a charming smile. Everyone who plays with her, gets lots of little sounds in return. She sleeps well, she eats for two, she barely cries. “Enjoy every moment”, everyone says. And we do. But sometimes my mind wanders: what will the future bring? How much development will she have? Will she ever be able to sit straight by herself? Questions I struggle with, but don’t get an answer to. And just like every other parent, you just want the best for your child.
Unfortunately, we know what the best is, but it is fairly unreachable : the new medication Zolgensma, a therapy that inserts the SMN-1 gene she is missing, into her DNA, is extremely promising. The results of the first studies show that with Zolgensma Pia has a far better chance at development, more muscle power. We have done everything in our power for her to get this medicine: let her take part of a clinical trial (but we were two weeks too late to enroll), a begging plea to the pharmaceutical company Novartis, a cry-out to someone who works in the company who wanted to help us, requests of our doctor in the hospital, .. All without any result.
There is only one way for Pia to receive the gene-therapy : pay 2,125,000 dollars. An insane number, an amount we can never reach. But we can’t and we will not give up. We organize a fundraiser, play on the lottery and beg all the people we can reach for a donation. Maybe lots of little gifts, can make a big one. Maybe we can proof we are a society who will do anything it takes to save this one, beautiful girl and give her the best life possible. So we do a big call-up: share this message, this website, the Facebook Page TeamPia, het Instagram TeamPia2018. Let’s all work together to make this unreachable amount realistic. If you want to give a hand in the fundraiser or give a little (or big) donation, please let us know. All aid is welcome, however small or big. It’s not easy to beg for money, to friends or strangers, but unfortunately it is our reality. To give Pia every chance, we need money. And maybe we can get there, if we all do it together. All together, Team Pia.