Anastasia Tor is organizing this fundraiser on behalf of Elena Toropova.
Hello to everyone! Sorry for a long read... this is a story about one beautiful angel with BPAN. My name is Anastasia Toropova. My little daughter, Alice, is living with a very rare genetic disorder, BPAN syndrome. In her first year she was developing almost on the same level as other kids, but from her first day I started to notice that something wasn’t right. She would wake up completely disoriented, her jaw would constantly shake. I was worried, I knew something was wrong. Ontario and BC doctors kept saying that everything is fine, that I should worry less and that children develop differently. Nobody would take me seriously... Doctors call me a “mama bear”. After going to many different doctors in the hope to find what’s going on we still couldn’t get the anwer. When Alice was 2.5 years of age when Dr. Shiva from BC heard me out and began searching for an answer. We were sent for multiple tests and all the results came in negative, “nothing was wrong” they said. However, Alice still couldn’t walk, speak or control her body. Her reaction was slow, hew jaw was still shaking, she won’t react to pain and she would suddenly start screaming at any time of the day, without moving. Alice screamed loudly non-stop for at least 10-20 minutes every night... Every night... We were hopeless as the doctors still couldn’t find what was going on. Upon moving back to London, Ontario we were taken in by Dr. Gloor. She is our star... She began the diagnostics all over again, this time focusing more on the genetics and neurology. After many many tests we found out that poor Alice was having 5 different types of seizures... 5 to 15 times a day... Next they took us in for genetic tests. I was clear, but her dad refused to give in his blood. Because of him, it takes much much longer to find any answers... After many many weeks of waiting, we finally got the results. On June 26, 2018 my hopes for Alice’s recovery and her future have vanished... when I heard the diagnose… BPAN. BPAN syndrome (beta-propeller protein-associated neurodegeneration) is a disorder that damages the nervous system and is progressive, which means that it gradually gets worse. Alice was one of the 100 kids in the entire world(!!!) diagnosed with this disorder. Kids with this syndrome develop a buildup of iron in their brain... that swells and slowly dies off... Alice had very little time and no hope for survival or normal live... Alice was diagnosed with a terminal illnes... My heart was broken. I couldn’t believe that the worst possible scenario can happen to my little girl... There is no cure and no way to tell what is really happening to her. She can never tell what’s wrong, what hurts and what she feels... she can’t even say “mama”… Every day she’s getting worse and worse... Her muscles are losing the strength and I can only extend her life by constantly doing exercises... I don’t know how long she will stay with us. I worry for her every minute of my life. Any day can be her last day... I love my daughter so much !!!! No matter what, I will always be with her and do everything for her!!! So she can stay longer with us... Currently I am gathering funds for her medical expenses (safe bed, special needs transportation, special needs feeding chair, diapers, special needs babysitters, nurses, massage therapies, chiropractic therapies and much much more) There’s not much that I can get from the government so most of it needs to be paid by myself. As Alice’s health gets progressively worth, the medical expenses grow as well and I can’t pay for it myself anymore.. I ask for any little donation that you can give. Anything will help!! If you have any questions you can email me at: [email redacted]. Every dollar counts!!! ￼ Thank you for your time ￼