Interview with Silvia, mother of Leo, a 10 month old patient with severe combined immunodeficiency
Leo is 10 months old and at the end of september he was diagnosed with severe combined immunodeficiency (SCID), a rare and serious illness.
As a consequence, his little organism cannot fight infection and his life in a normal environment could be fatal. A bone marrow transplant is the only possibility for a cure for Leo. His 6 year old sister Aloma, is not compatible with him and therefore the only opportunity for Leo, like many other patients, is an anonymous bone marrow donation.
We wanted to talk with Silvia, Leo's mother, about the current situation:
-What entered your head at the momento Leo was diagnosed?
Silvia: That it couldn't be true. That it couldn't be happening to us. I am a muscular dystrophy carrier and when I realized that I was pregnant I had a chorionic biopsy to make sure that Leo didn't have this disease. Genetic studies were carried out at the Sant Pau Hospital which confirmed that Leo was not affected by muscular dystrophy. Later it turns out that he has severe combined immunodeficiency.
-What was this process like?
Silvia: First you are devastated, you look at your child and you can't stop crying. It can't be true: 1 child in every 100,000 is affected by this disease. "Very few children", explains the doctor. "And why Leo?" I thought.
-How exactly is the treatment?
Silvia: Leo entered intensive care on the 29th September with a second bout of pneumonia. Now we mainly have to make sure that he doesn't receive any form of infection but at that point the priority was to control the pneumonia. We have now moved to the Sant Pau Hospital and Dr. Badell is instructing us with greater details about the process we are going to go through.
- What is the reaction of a baby like Leo to basically living in a hospital?
Silvia: It is really tough for him: he wants to be in our arms constantly but we try to play with him and entertain him as much as possible.
-What is your relationship like with the other parents who have children in the hospital?
Silvia: They are like a second family. You make links with parents whose children are also going through really difficult situations. It is curious that when we were in the hospital the first time, for pneumonia, on the 11th of August, I met Ester Torres, an old colleague whose son Marc is suffering from leukaemia. After a day on the ward, Leo was transferred to intensive care, where he stayed for 20 days, 14 of which inside an incubator. We saw many parents in the intensive care waiting room whose children had been diagnosed with brain tumours, and cancers, and we thought to ourselves, "our case is nothing" it's only pneumonia. How ironic!
-When and how did they tell you that the only option would be a bone marrow transplant?
Silvia: When we returned to A&E with Leo on the 29th of September, he was taken directly to intensive care with pneumonia. When the intensive care doctors called me, they told me that Leo had something else, in addition to pneumonia. On the 1st of October again to talk with me but this time a genetics doctor joined the intensive care doctor to inform me that Leo was no capable of producing defences. There existed two possibilities: that he would produce certain types of defences or that he wouldn't produce any at all. The first case could be controlled with transfusions, but the second was more serious and could only be treated with a bone marrow transplant. After explaining this to me they informed me that they were going to put Leo on the list of those searching for a donor. The following day they confirmed the diagnosis, Leo had severe combined immunodeficiency.
-How did you and your family feel?
Silvia: The first thing I felt was impotence and anger. You think "it cant be true, he's only 9 months old, he's been in the hospital a month and now this... he's only a baby". His sister Aloma is not used to it yet. She is 6 years old and she doesn't understand why she cannot see Leo. Julián, Leo's father, only repeats "Leo is strong, he'll be fine". His grandparents and the rest of the family support us unconditionally, they all know what is happening and that Leo will overcome this challenge like a champion".
-What is it like waiting for them to tell you that there is a compatible donor?
Silvia: It feels like an eternity, like time has stopped. Everything seems to pass in slow motion, the type, the transport...
-What will it mean to you the day that your doctor calls you to say: "there is a donor for Leo"?
Silvia: The day that we have a 100% compatible bone marrow will be one of the happiest days of my life, because it will mean life for Leo.
-What would you say to that person?
Silvia: There are no words to thank someone for something like that. It seems too small to simply say "thank you". All the donors in general deserve recognition for such an altruistic act which saves a life.
-What would you say to someone who is thinking about becoming a donor?
Silvia: It is something very personal. From what I know now, I'd say that people don't appreciate what a bone marrow donor is. Many people believe it consists of the removal of the spinal cord. I wasn't a donor but you don't realize the significance of it until you go through something like this. I would imagine that many people state "I'll go" but never find the moment to do it. I'll take the step; I hope that many others do it too. Only one in every 40,000 is compatible with another. Finally, I should say that the donation of bone marrow is something you can do in life and it holds no risks.
-What do you ask for the future?
Silvia: Phew! I dont ask for anything, I just hope that we get there O.K.
-What are your plans at the moment?
Silvia: I make plans day by day. At the moment we are in an isolated ward, with only two people (my mother and me) taking turns with Leo. It's about trying to do the same every day; establish a routine; to, if possible, not disorientate Leo even further.
-Have you changed your values or your dreams at all since Leo was diagnosed?
Silvia: I dont think my values have changed because my children continue to be the most important thing in my life. But one thing I have seen is that there are many supportive people. On the 13th of October, we had a visit from Santi Rodriguez, the famous comedian who is involved many social causes in Jaen and further afield. In the town where we live, Sant Cugat Sesgarrigues, everyone has paid special in Leo's development, and many people have registered as donors. Many anonymous people have helped us, they have given us support and they have also gone to the hospital to become bone marrow donors.
Now my only dream is to see Leo healthy and that Leo and his sister, Aloma can be together again soon. I hope we all can enjoy our family, our friends, and our lives.
If you want more information about the donation of bone marrow to help people like Leo (and many other patients) to have the opportunity of a cure, click HERE. Remember that the donation of bone marrow is altruistic, anonymous, and universal. If you register as a bone marrow donor, you could be making a donation to a person from anywhere in the world. If you want more information, write to [email protected] or call us on our free phone number (in Spain) 900 32 33 34.
You could also become a member of the José Carreras Foundation. With a little amount you could help us to continue our research.
If you want to get a "solidarity to the core" T-shirt to help patients like Leo, click HERE.
Follow Leo's daily development in his blog: www.leobuscamedula.blogspot.com