Mrs. Florence Agbugui is our DOZ Show Preferred Guest for this issue of DOZ Magazine. Incidentally, she is also my maternal aunt. Several years ago, her daughter Amanosi, who was born with sickle cell disease, underwent a bone marrow transplant to treat the condition. The bone marrow donor was none other than Amanosi’s younger brother who was 11 at the time and although apprehensive desired to help his sister live a life free of the pain that comes with sickle cell anaemia.
In this interview, Mrs. Agbugui shares with us her daughter’s victory over sickle cell disease and what it means for her as a mother. She also shares how her family established Amanosi’s 5k Victory Walk / Run, which is held in July every year, to create awareness and raise funds to help others with sickle cell anaemia. If you or anyone you know has SCD, then you want to read this interview. Be inspired!
When and how did you first discover that Amanosi had the sickle cell disease?
When Amanosi was about three weeks old, there’s the genetic screening for newborns that they usually do in the hospital, so it was discovered that she had sickle cell anaemia and when they contacted us, they had to do a second test to confirm the result. And as we know, sickle cell disease does not just come from the baby both parents must have it; that is why it is an inherited blood disorder.
But she is the only one of your children that has it?
Yes, she is the one that has the anaemia, the other two children are carriers, which is also known as a trait.
So, learning that your three-week-old baby had sickle cell anaemia no doubt must have been very devastating for you. Did the doctors at that point offer any hope for a lasting treatment?
Most definitely, we were devastated as parents, but the devastation shifted to swift thinking that we believed that God is in control and He will take care of things moving forward. And that was what happened. The doctors did discuss with us the risks that were involved in the child having a sickle cell at that age. But for treatment, the immediate treatment for an infant will be to put her on a prophylactic antibiotic, which was penicillin, and she took that from about three months until she was about five years old.
So how did the idea come about to use her brother’s bone marrow to treat her?
Okay, so for many years we were going to the clinic for treatment, which will be regular blood tests, and transfusions also. We met another family whose son, had sickle cell and they were already discussing transplant. At that time, we did not even know that there was transplant. So long story short, he had the transplant, it was a successful transplant, and that inspired us, and we had a consultation with the bone marrow team at the hospital, and that was where it all came from. At that time, Amanosi was going through transfusions and with transfusion comes iron overload, which she had to treat also, but we were moved to another hospital, and they changed the direct transfusion to apheresis, which helped reduce the iron overload, so she was able to manage her pain and other crisis.
When it came to her brother being a bone marrow donor, were you worried about how it would affect him?
With our children, we always present whatever we have in front of us before them so that way they can be part of the discussion. When it was first brought to him, yes, he was apprehensive, and as parents, we were worried. But after consulting with the bone marrow team, of course, they will tell you the side effects of things that can happen and it’s up to you to accept or not. But my son was very willing to help the sister out, and there would be minimal effect to him as a donor so, it was a decision based on him, he was ready to give the sister new life which he did, and he is the hero in all of this.
That was a very courageous thing for him to do. How old was he at the time?
He was 11 years old. His stay in the hospital was about three to four hours for observation. He went home the same day, but of course, he was swollen and sore all over but other than that, the sight of the injection was the only painful experience he can remember till today.
How has Amanosi fared following the treatment? How long ago was this to begin with?
She was 13 when she had the transplant in 2011 and Amanosi has recovered. She recovered rather quickly. One year after the transplant, she was able to do most of the things that they would tell you that you couldn’t do. And she was weaned off her medication except for one medication at one year after transplant. So today she is doing well. She did her yearly visits until last year when she went for her survivorship. It is a programme they have at the hospital for people who have done this transplant to come back and have a series of tests done and just to share how the person is doing.
That’s great. So far, she’s been doing well, and there have been no regrets concerning her having that kind of procedure?
Not at all, I mean with this kind of procedure, it’s a hard decision especially when you hear of people that have gone through it in the past and didn’t make it through. So, we are very blessed that we asked God to take control and He did, and in the caring hands of the doctors and the medical team, everything went well.
Awesome. As a mother what does this victory mean to you?
It means God’s grace to me. Because when Amanosi had sickle cell, I remember the challenges that we as a family had to go through and you know especially for me as a mother I was in school I was working and I know what we went through to get to where we are today. So, to me in one word, it’s grace. I am happy that the child is no longer in pain because the pain of sickle cell is subjective, but as a mother, I could see the pain through her eyes and Amanosi went through those crises even though she was so determined to get well. We were all worried about her, but as a mother, I feel elated and grateful to God for what He did for my family.
So how have you used this victory to help others who have the sickle cell anaemia? Because you were inspired by another family’s story. How are you using your own story to inspire other families?
Okay. So, when Amanosi had the transplant, after the recovery she said to us as a child, I will like to give back, but I don’t have the money to give to the hospital or for research so how can I do something? And she came up with a 5k walk, and she has a yearly walk now. This year will be the third year. It is called, Amanosi’s 5k Walk / Run. And this is the last Saturday in July of every year, and you can find us on Facebook. And this is one way that she’s been able to continue with the awareness and raise funds for the hospital and the sickle cell department for research.
