The story of Evangel
My son Evangel has a rare condition; CTD – Creatine Transporter Deficiency which is on of the Cerebral Creatine Deficiency Syndrome. Currently there is no cure for CTD. Evangel is severely affected; has struggles with breathing issue, feeding issues, painful muscle spasms, he is non-verbal, can not sit nor stand. He is floppy and stiff at the same time. He also struggles with seizures which is currently being managed with medication.
I am Evangel’s primary caregiver. His disease makes it difficult for me to work full-time due to the cost implications of a private nurse, I currently work part-time and hired a daily nanny to attend to him while I am away. But this means attending any social function or church services with or without him is very difficult, because you have to plan to attend. I have been blessed with some few family members and friends who come over to visit randomly. Due to his feeding difficulties, we spend a total of about 1:30 in feeding at a time.
Evangel doesn’t get to do things for himself like going out to play with other kids. We don’t go out often due to the fact that we don’t own a vehicle of our own so make it very difficult carrying his wheelchair around, but when we get the change to go outdoors Evangel loves it. He also likes watching cartoons, bubbles and having massages. He really like spending time with his little Aunty and hearing me sing to him.
Evangel’s rare disease has really opened our eyes to a whole new perspective to life. It has also challenged my sense of empathy. His condition has created great opportunity for me to meet different people in the medical field and the rare diseases community. It has also crated the opportunity to help others on a similar journey.
Evangel’s rare disease has turned me into a mini-researcher. I am able to source the cheapest places to buy medical equipment, joined the right parents support group and passed the information to others. I am confident that my husband and some few family and friend got my back in advocating for my boy. I couldn’t have come this far without the massive support from my kids sister, my husband, and some few friends.