I want to be a superhero

Our lives are marked by two major “before and after” moments. The first was when our oldest child Mateo, who is 13, was diagnosed with severe haemophilia A. The second was when our son Tadeo, who is six, was diagnosed with insulin dependent type 1 diabetes at two years old.

Tadeo’s diagnosis with severe haemophilia A when he was two months old was not a surprise because of his older brother’s condition. When Tadeo was born, our main fear was of the consequences of him being born prematurely and not of him having haemophilia like his brother. When he was diagnosed we were already prepared to face his haemophilia and we knew we were accompanied by the team at the Haemophilia Foundation of Salta.

From the moment Tadeo was diagnosed with type 1 diabetes, his haemophilia became second priority for us. Today, haemophilia is not limiting Tadeo’s daily development in any way because his factor VIII concentrate, is performing well. Tadeo’s treatment twice a week gives us peace of mind and reassurance that at least his factor VIII levels are stable. Mateo is also doing well on human coagulation factor VIII concentrate. He acts as Tadeo’s protector by cherishing and protecting him against harm.

It is important to explain our children’s haemophilia to others because there is so much misunderstanding and even misinformation in society. One of the major challenges we face is the ignorance of teachers at school. We counteract this by giving people clear and accurate information. We explain that Tadeo is not being harmed, his condition is not contagious, and we tell them where to call in an emergency situation.

From the moment Tadeo was diagnosed with type 1 diabetes, his haemophilia became second priority for us. Today, haemophilia is not limiting Tadeo’s daily development in any way.

The Foundation has had a significantly positive impact on our lives and on our kids’ lives. Through it they have met other children with haemophilia. The Foundation has given us counselling, training and support, and without it we would not know what to do as parents. Whenever we have questions the Foundation welcomes us with open arms. Our kids feel empowered and protected with their continuous prophylactic treatment.

Tadeo’s diabetes is one hundred times more powerful than haemophilia because it is more difficult to control. Our biggest challenge is to maintain stable glucose levels in his blood. Diabetes gives us no rest throughout the day because it is directly related to food intake, exercise, climate and the mood of the child.

Tadeo takes 16 units of insulin in the morning, and then at least eight on-demand doses of insulin as we monitor his blood glucose levels throughout the day. Tadeo manages his symptoms and knows when he has high or low blood sugar. He does not handle his medication or dosage; for that he depends on an adult with knowledge of his pathology.

Our advice to a family who has discovered that their child has haemophilia is: get support and educate yourself. Do not overprotect your child. Do not listen to advice from doctors who do not know this pathology. Do not go to healers who can supposedly cure haemophilia with natural preparations. Teach your child the importance of prophylaxis and how it is performed. Give your child tranquillity and a sense of security.

As parents we are free thinkers. We are committed to learn each day and to grow together with our children. We can make mistakes and we can try to learn from them. We instil joy, positivity and responsibility in our children. We share the most we can with them. Our goal is always to promote independence.

It is important to explain our children’s haemophilia to others because there is so much misunderstanding and even misinformation in society.

Tadeo never gets bored. He loves to play with other children and enjoys swimming and physical education at school. He loves superheroes and playing video games. Tadeo collects action figures of Dragon Ball, a Japanese manga series.

Tadeo’s dream is to be a superhero.

A diagnosis of haemophilia is not the end of the world.

Dr Maria Sol Cruz, president of the haemophilia foundation of Salta

The Haemophilia Foundation of Salta is dedicated to the diagnosis and comprehensive care of people with haemophilia. In the Salta province we have 63 people with haemophilia (45% of whom are children), 100 with Von Willebrand disease and 20 affected by other factor deficiencies. We offer diagnosis, treatment, multidisciplinary care and information about the diseases and how to improve quality of life.

In Argentina local healthcare professionals often do not have the knowledge or training to treat haemophilia. There has been insufficient understanding of how to take care of people with bleeding disorders, and often there were misunderstandings and mental barriers. The Foundation acknowledges and faces these challenges by developing educational programmes for healthcare professionals, as well as programmes educating patients and families.

The most important job we have is to demystify haemophilia. Prophylaxis means that children today do not have the same orthopaedic problems and joint problems experienced by adults who did not have prophylaxis growing up. Today families do not have to be afraid of this disease. A diagnosis of haemophilia is not the end of the world.

Our main role is to support families by providing tools, know-how and advice. Empowerment comes when the family understands the disease. Our families have direct connections with the Foundation, and access to a network of multidisciplinary physicians and healthcare professionals.

An early diagnosis is as important as getting the right treatment. In Latin America we are often lacking the tools and specialised laboratory staff to support diagnosis. The first challenge is proper diagnosis, and then providing proper treatment on time. One of our goals is to help physicians better understand the condition and the importance of treatment. Another goal is to inform and educate society, for example to expel the myth that children with haemophilia are prohibited from playing sports. To support families we have created guides for parents and teachers, and we go to the schools ourselves to educate them.

It has been a challenge to demonstrate the value of our work. Early attempts to establish a healthcare unit dedicated to haemophilia were initially rejected by the Ministry of Health. I was very glad when an Act was signed by the Ministry of Health in July 2016 formally acknowledging the importance of the Foundation’s work.

After going to the World Federation of Hemophilia (WFH) World Congress in Melbourne Australia, in 2014, we made a legal request to use Octapharma's plasma derived factor VIII before regulatory approval in Argentina. Authorisation was granted and currently we have four patients on compassionate prophylactic use of it. My experience of this product has been excellent. With the pre-filled syringe, it’s easy to prepare, it’s quick to infuse and the half-life is great meaning fewer infusions a week.

Tadeo’s case is special because he has two diseases: severe haemophilia A and type 1 diabetes. It is unfortunate, but it gives us the opportunity to try to better understand the impact of having these two major diseases at the same time. We are learning every day how to improve things for him. I am very glad that Tadeo’s parents are so engaged in understanding what they can to improve his quality of life.

I love working with families and having social interactions with many different people. I love taking care of people and seeing them improve each day. I travel internationally and nationally and am constantly learning. I am always eager to come home and apply and share the knowledge I have gained.

Mother Teresa said: “Not all of us can do great things. But we can do small things with great love.” What we do may appear to be small, but when done with love it can have a huge impact.