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Liham's Story
Heroes
Liham, 2 years old
🇫🇷 Paris, France
Published July 8, 2024
Birth and diagnostic difficulties
For us, it all started in January 2022. Our son, only 10 days old, was hospitalized because he wasn't gaining weight. Very quickly, digestive problems began to appear, and given the seriousness of the situation, we were rushed to the Necker hospital for a central catheterization, in the hope of helping him regain his weight.
But his condition deteriorated rapidly. The results of his blood tests were catastrophic, and his liver was severely affected. We were in danger of losing him.
Doctors considered every possible scenario, and Liham's case was discussed in several departments without a diagnosis being made to explain what was making him so ill. He was oxygenated and transfused on numerous occasions.
Diagnosis and transfer to intensive care
One morning in March, we were told that they had identified the cause: FHLH (Familial Hemophagocytic Lymphohistiocytosis). They also discovered that it was associated with Microvillous Inclusion Disease (or MVID), a condition that prevents him from absorbing food, an extremely rare combination . Liham needed urgent intensive care.
Bone marrow transplant and the start of a long and difficult journey
We had to wait until he was five months old and a few kilos heavier before he could receive a bone marrow transplant.
The wait and the stress were unbearable.
Seeing some of our room-mates not survive haunted us, and we think of them a lot every day.
In June, we learned that the transplant had taken. However, this was followed by a number of serious complications linked to the protocol itself. It was a period of constant stress, but after eight months in hospital, we finally got the green light to go home in September.
MVID and home parenteral nutrition
Before that, we had to undergo a month's training to learn how to manage parenteral nutrition at home. This was the only way Liham could have his daily nutritional intake, despite the MVID that is part of his illness and which has no other treatment to date.
Preparing equipment for home parenteral nutrition
Back home, we realized that our lives would never be the same again.
Medicalization had become part of our daily routine. In spite of ourselves, we became nurses and rearranged his bedroom to accommodate the care equipment. We constantly monitored Liham's temperature, because at the slightest sign of fever, we have to return to the hospital for at least 48 hours, to check that the catheter hadn't become infected. We've adapted our lives so that we're present for treatment at fixed times in the morning and evening.
Despite everything, we've learned to live with the disease and we're making sure that Liham has as normal a life as possible.
We can't thank enough the experts who looked after our son and saved his life enough. It was Liham who gave us the strength to hold on. He showed incredible courage in the face of numerous painful tests, blood tests, lumbar punctures and treatments with awful side effects. We love him more than anything and, looking at him, we realize how lucky we are to still have him with us.
Present and future
Today, we are supported by a gastroenterologist who adjusts Liham's pouches according to his needs and closely monitors his growth and development. We also benefit from the support of specialized nurses who help us manage all the logistics involved in home TPN.
We're lucky that Liham's hospital stays are now relatively spaced out and he can have an almost normal day. He can do everything the other children do: play, jump, dance, play sports, go to the park, go on vacation, learn new things and play with his little brother.
We've learned to live with parenteral nutrition and the stress and vigilance it requires, but that doesn't mean we're content with it.
We have high hopes for scientific and medical research, and have decided to create theCure MVID Association to help researchers, clinicians and families around the world connect to advance the search for a cure.
Knowledge and management of MVID have come a long way in recent years, but many patients are still not diagnosed promptly or given appropriate care. Some patients have more severe forms than others, requiring extensive and invasive surgery.
Our aim is to make progress on the road to therapy, because despite research efforts there is no cure, and all patients today live with the constraints of lifelong parenteral nutrition and the associated inconveniences.
As long as we can, we will fight for this and for all children with MVID to be freed from their medical burden.
Affiliated Association
