BPAN

Rare Disease Day is Feb 28 2021 On June 5, 2017, our lives turned upside down. The genetics clinic at CHEO in Ottawa called and said that they had something to ...tell us, but could not discuss over the phone because of the severity of the outcome of our recent testing. So we went as a whole family like we always do. And this is what was revealed to us. Our genetic doctor took time and found the words to tell us that Nickolas had an ultra-rare genetic disorder. It’s a mutation on gene WDR45, also known as BPAN. An hour later after our appointment on our way home I was holding this letter for Nickolas in my hands I did not know what to say or do. It was a beautiful summer day, I looked up into the blue sky and prayed. Did not know what I was praying for or at that time to who. I was just wishing that my mother was there to explain all this to me. Because I was adopted I learn about my family medical history through my boys. Well then tears just started pouring out. I called my Aunt Terri and could not form the words to tell her what just happened. Adrien had to explain to her. I did not talk to anyone I did not do anything for couple weeks. I tried to go to counselling and that did not seem to help. Adrien spoke for me all the time because even to this day I still have a hard time talking about it or telling people about what my children have. When I thought that I had the courage to talk about it I gathered enough strength and called my sister Nina Khromova. I cried and cried with her. We both cried on the phone. No one said a word. Just both felt the pain. Then again a month later July 28 2017, we got the call from genetics for another appointment. This time we were positive on what this visit was all about. So when we entered the doctors office I held my head high. Adrien told me everything was gonna be ok. I thought that I prepared myself on the ride there for this. But hearing those words that my other two boys have the same thing, was heart breaking and felt like I was being stabbed all over. How could this happen? How is it that I have the same thing and yet am able to do everything that I do? I walk, run, play, read... God gives you what you can handle. Since we found out about our boys there are only 11 cases of BPAN in Canada. About 450 worldwide. And most are girls. There is so little research being done on boys. Please help me and my family raise awareness. Help support special needs children and adults in our community. Help support specials programs for them so they continue to learn and grow. God bless all those who are facing difficult times, especially with special needs. I love my children and would not change anything. They are loved, cared for, happy and in good health. Bpanwarriorscanada.tk I cried while writing this out. Still very emotional. But have to stay strong for my children. Take it day by day, live life to the fullest and enjoy every moment. Hearing them laugh, seeing them grow is what I live for. Our BPAN Warriors See more

Hello everyone. Welcome to our BPAN Warriors Canada page. What a beautiful Family day we are having. I'm in the mood to bake today have been making homemade keto bars for my kids. They've been enjoying my baking lately and don't even notice that there is no sugars or any bad and fatty ingredients lol. What is everyone else doing on this fine beautiful family day?

Terrance who is 5 years old has been on CBD oil for 6 days now. 0.28ml 2x a day and increases every week until seizures are under control. He’s on 3 different m...eds right now trying to help control them. Valproic Acid, Clobazam, and CBD. Since being on CBD he has been very mellow, tired, doesn’t eat like he used to. But on a good note he is attempting to walk with help and has more patience to do other things other then watching Mickey Mouse Clubhouse. And he plays ball, comes up for a lot of cuddling, and requests to play with you a lot more then before. There is a big change in him in the last week since he’s been on the CBD, but still seizures are still there, not as much and not as long though. See more

Today is Rare Disease Day!!! Want to reach out to all those battling with a Rare, non curable disease From our BPAN family to yours You are not alone Together w...e stand tall We fight together for the sake of our children and loved ones Don’t give up Hope! We have three boys with BPAN 9,7&4. So blessed to have them in our lives. I could not have asked for anything better in this world. See more

Just received news from Make a Wish for Nickolas. We are excited to let you know that the calendar has been created and waiting to be installed! Please see belo...w the date your wish child will appear on CTV. Usually it’s early in the morning between 7-9am. After date indicated their door will be revealed and their picture will be in the calendar on the wall at the CTV building downtown (across the BeaverTails) Nickolas' window will be opened on Thurs Dec 5th and his Wish will be revealed. So exciting. See more

How am I to teach my son how to do something when I have no idea on how to do it myself? How am I to teach him how to read? I'm learning to read in basically another language.