A Rare CHANCE Life

My story is about my son Chancely, who is a very strong & vibrant young boy!

Parent's intuition

I started noticing he was sick extremely often at about 6 months old. Then a year came & things were getting worse. He would get these sores in his mouth that would cause both his lips to swell up & anything like burns, cuts, scratches, or bug bites - all the things that happen to young children would get infected. I kept asking his pediatrician to run some tests & he would tell me I had nothing to worry about!

He was sick one time & was due for vaccines & I begged them just to wait & they would not. They told me it was fine & gave them to him anyway! That night I stayed up all night holding my baby in my arms while he was burning up & kinda almost convulsing with his eyes rolling back in his head. When I called in they must have thought I was being dramatic because it didn’t seem to alarm them. The last time I took him there I left crying because that doctor told ME I needed to take parenting classes!!! Due to everything that would go on … that was the last straw!

Taking things into my own hands

I went to the store & bought a calendar book so that I could write his symptoms on the correct calendar day. I did that for months & I'm so glad I did! My plan was to take him into children’s & take the book and ask them to run some tests. Well before that happened he ended up getting extremely sick & it warranted me taking him to the ER & I took the book.

He was admitted even before he started to dramatically decline. By the next night, his oxygen was dropping & I was running out of his room screaming, "Do something for my son!" People came in running tests. His blood gas was extremely high; his blood was toxic. My 2-year-old was septic. He was dying. I dropped to my knees begging God to spare him.

Holding on to hope

They worked tirelessly through the night on my baby boy & tests came back that he was in severe neutropenia. They ended up giving him multiple IVs; one of them being in his neck. They were pumping fluids & very broad-spectrum antibiotics into him. Somewhere in that time a doctor went through that whole notebook with me & due to his neutropenia blood results, & the information in my book, they decided to start him on neopagan.

The turning point

He reacted so well! Within days the 100% oxygen he was on was dwindling down to 90, then 80, then 65 & so on. His blood gas was looking better & better - there was some pneumonia on his left lung but that was honestly the least of our worries. My baby got better & we eventually went home.

After the genetic testing in the hospital, we found out my son has cyclic neutropenia - an extremely rare disease. I was devastated & I felt completely alone. When I reached out for support from other mothers like me … I found none. This was back at the end of September of 2023 that this happened & as we are going into December. I have found solace - I created a YouTube channel. My hope is to create a community of mothers & children like us - facing the word RARE. So that way when the next mother is searching the internet for some hope & support she finds ME & MY SON & the community we built! If you are interested the channel is called A rare CHANCE Life! We hope to see you there soon!