KNOWLEDGE IS POWER

With the advent of new technologies and the rapid pace of scientific discoveries, staying up-to-date on the latest in BPAN research is a daunting and often overwhelming task. As with many rare-conditions, parents and caregivers will become their communities "expert" in BPAN. Many anecdotes have been swapped where the parents have known much more than the doctor's to whom they have turned to for treatment for their children.

 

Rather than becoming discouraged by this fact, we encourage you to become the master of this domain, by educating yourself. Empower yourself with knowledge, ask questions, get a second opinion, trust your gut -- so that you may become your child's best advocate. Along the way, you may find a doctor, specialist, researcher or caregiver who becomes another link in our BPAN advocacy campaign. In increasing awareness of BPAN in our local communities, we invite others to participate in the change required to make long-lasting and meaningful advances in science, medicine, law and policy reform to protect our BPAN Warriors and to ensure their quality of life.

KNOWLEDGE IS POWER - ARM YOURSELF!

Hannah's Journey - BPAN, a Subtype Of NBIA

 

We can't believe they day came so fast. Hannah has been a really trooper , no complaints when having her wires attached. It's quite the process. 30 min of having her head measures and marked, then scrubbed, and finally buttons places and head bandaged. She tolerated it all without a peep. She knows this test is going to help her. Luc and I talked her through it at different times today. 


She is all ready for bed and a nights rest. We have captured one long absence seizure already.

The lack of sleep from interruptions from and children's noises in the hallway will trigger some more. I am sure of it.

I can't put into words how much I dislike what BPAN does to our little girl. She is truly a warrior. Along the way we have moments that make us smile and brighten our day. Seeing our pediatrician and having him send an xray machine ASAP for a pain she has in her leg that is unexplained is one. He is one amazing man and doctor who doesn't do things by the hooks rather from the heart. Two, a Milton mom, dropped off a Christmas card with a gift card for Hannah and a Timmy one for us. Although not necessary - after her and her husband read Hannah article- they were touched and wanted to brighten our day. It truly did!!!

Lastly- there is a local charity called Million Dollar Smiles. Hannah got picked to participate. ( Dec 16) They help brighten Christmas ...make it a little more special. They surprise a child ( and their siblings ) with a huge stuffed bear and gifts card. It's not so much about the money really. ..our kids are very blessed. It's about the memory they will have. A happy one because of BPAN....it fills my heart with joy to see them so happy. As I have said it before, there is beauty in this journey.

I will keep all of you posted. 
Maria

LEARN MORE ABOUT  MARIA, HANNAH AND THEIR ENTIRE FAMILY

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