I wish someone had told me… more about my daughter’s sickle cell
It all started when my daughter Jade turned ten months old and she was diagnosed with sickle cell. She was born with it but I never found out until she got this high temperature that wouldn’t go despite all the antibiotics she could get. I took her to the hospital and they said that her blood count was extremely low. The doctors ran some tests for different diseases like heart, cancer, sickle cell and more. I couldn’t choose one because they are all bad. I remember saying to myself, ”I would rather sickle cell” but when it was confirmed I broke down and even more so when I learned about it.
I have been through tough times. She is nine years old now and is learning about her own illness, which is a bonus to her keeping well. I have enquired a lot myself about the illness and have learned a lot about how to take care of her better. The disease is a genetic blood disease, so it would be a miracle from God for her to heal.
I have been talking to a lot of people about stem cell treatment. If I had known more about this it would have had a big impact on her condition today. I’m currently trying to learn more about stem cell therapy but for now, I will continue my vital parental instinct practice.
I wish someone had told me…that I have been a carer since I was 15.
My name is Joan. I’m from a family of nine children. I’m the second youngest. I have a sister called Sheila. She is five years older than me. When I was about ten years of age I realised that Sheila was different from the rest of the children. She had lots of visits to the hospital because she was born with a cleft palate and if there was anything going on, Sheila would always get her own way. This never affected me but my older siblings found it difficult.
From the age of fifteen I started to care for Sheila. No one ever asked me to; I “just did”. As we were growing up together I would help her with her hair, do her make up, even sometimes go out together. When I look back, I felt that someone had to look after her and that person was me.
I remember asking my mother what was wrong with Sheila. She said she was the last child to be born at home and that she was in labour for sixty hours. There must have been a lack of oxygen. My mother used to say she fell off the table at age two years and must have hurt her head but I think she said that to cover up. In the 1960’s people were afraid to say that their children were “different” or “special” in case their children were taken away and my mother loved us all equally whatever our faults.
I met my husband two years after my mother passed away and during our time I found it was time for “ME”. I fell madly in love and we had a great time. Both Joe and myself included Sheila in our outings and she was happy for me. When we got married in 1998 it was hard for her to adjust to me no longer living in the same house. But in time she was fine.
When we had our children I was busy with my own life and she went through a bad time. People put it down to an early menopause but, looking back, she was painfully lonely. Three years ago she developed chronic arthritis in her knee and found it difficult to work. Her quality of life has suffered. She has had a knee replacement and is doing very well. Sheila is capable of living alone but needs help with cooking, paying bills, organising the house, speaking with doctors, etc. I like doing this for her and it comes automatically to me. She is always grateful. Of course, we do get on each others nerves and need space but we are good pals. I love her very much.