Advocacy – A Mothers Voice

As the mother of a child with a rare disease I’ve always known that advocacy is important. We’ve been advocating for our 4 year old son Armando (PFIC 2) since he was an infant. We have advocated for him with doctors, nurses, insurance companies and drug companies.

A few months ago I found myself saying “If I were Armando I think I’d be going crazy being so itchy, I couldn’t stand it! If I was that itchy I wouldn’t stop looking for something to help me until I found something.” In that moment I realized, wow, he’s only 4. As his mother I need to be HIS voice. If he could truly voice what he is feeling he wouldn’t be stopping until he found relief either! Realizing this I knew I had to be a stronger advocate for him and for all the kids suffering with this horrendous disease.

The current issue in the UK with Bylvay, not being recommended for reimbursement, has been on my mind a lot. Armando has felt the positive effects of these medications in trial and so I know how absolutely life changing these drugs can be! In my opinion it would be devastating if these drugs were not made available to all the PFIC kids out there who are suffering and desperately need them.

We are from Canada and from what I know about the Canadian system, the decision in the UK will have a huge impact. And I believe the same is true in many other countries around the world! I really believe that right now is an extremely important time to advocate for all the PFIC kids. They need us to give them a voice!

I know that if Armando suddenly wasn’t able to have access to these drugs that my husband and I would be doing everything humanly possible to find access in some way! Our PFIC kids deserve a better quality of life! My hope is that the whole PFIC community would band together and raise our voices for all our PFIC warriors!

Alexandra Perez