OUR STORIES
Amal (Kagame-Ogata Syndrome)
Kagame-Ogata Syndrome
Profile
Name : Amal
DOB : 2015
Disorder : Kagame-Ogata Syndrome
Introduction
Amal was born in 2015 with Kagame-Ogata Syndrome, a rare disorder which affects fewer than one in a million people per year. From birth, Amal faced many difficulties including chronic lung and respiratory issues which meant she needed to use an oxygen machine for many months in hospital – something she still needs to use at home during the night.
Amal is doing well today – she attends a special school and enjoys life. She still faces clinical issues especially relating to her lungs – even small amounts of dust are a big problem. After very long stays in hospital for months each time, it is a huge relief to Amal and her family that she is now living at home, and her routine care can be received from a specialist doctor and a geneticist during hospital visits, and from a physiotherapist at home.
RD Parents, AKA Doctors
Amal’s parents were unaware of her condition before she was born. They have had to learn about KO Syndrome and become experts. As most parents of children with rare diseases experience – they often know more about the condition than many medical professionals, as it is so rare and they devote a lot of time and energy to learning about it. Amal’s parents are constantly researching and learning about relevant anatomy, psychology and other areas of medicine relevant to their daughter, they are always determined to find new solutions to the issues faced by Amal on a daily basis. Their aim is to keep improving Amal’s life by implementing any strategies they learn about which could help her. At the moment they are focused on learning how food, drink and the environment can impact Amal’s health.
Amal’s is the only known case of KO in Malaysia (a large number of cases are in Japan) and it can feel lonely and isolating not knowing other individuals or families who fully understand. Doctors can help but her parents learn most from reading about others’ experiences online – although language can sometimes be a barrier as so much of the information available is in Japanese.
What Helps? Rules to Live By For RD Parents
Amal’s father thinks “machines, medicine and discipline” are all important for those facing rare diseases and their families. He also explains how they try to face issues one by one. Amal and her family have overcome unimaginably hard times, including Amal spending 6 months in a coma, and months-long hospital stays. These experiences have been psychologically difficult – having psychological help has been important.
They have found talking to other RD parents helpful, even those that don’t have experience of Amal’s specific RD. Working together and sharing solutions also helps – Amal’s family share one of her oxygen machines with another family who needs it.
Financial Impact
The financial costs faced by Amal’s family are significant – and things have been even harder since the Covid pandemic. Since Covid they no longer receive all of the benefits they did previously and their income has also reduced. They have received some help from the government including the JKM (Department of Social Welfare), and some non-governmental organisations (NGOs) have helped. So many other families are also in need though; getting the resources needed for Amal is difficult. Funds were raised for an expensive new oxygen machine for Amal via a social media campaign, as this equipment was not given to her by the hospital.
What Does The Future Look Like?
Amal’s parents’ main desire for the future is to nourish Amal and to give her as healthy a life as possible. Knowledge is far more important than money. No one knows how long they have left to live, but we can all continue to grow in knowledge and experience.
Staying in each moment helps Amal’s parents, as well as not focusing on big problems or only seeing what is wrong. They try to break problems down, as smaller issues are always more manageable. Amal’s father believes that you have to “keep going straight, don’t stop. When you stop, you go down”. They will continue to practice this positive mentality.
