Geshan & Thishya’s story

This is about our son, Geshan Wijethunge. He is turning seven years old on 6 October 2007 and he is the most adorable, good-looking kid we have ever seen.

Geshan was born in Sri Lanka and at birth we and our doctors could not see any abnormalities in him. But at the age of three to four months, he did not seem to be meeting his milestones, which made us worried. We took him to a paediatric specialist. He assessed Geshan, but could not find anything wrong and commented that ‘every child is different from one another and Geshan will take his own time to grow up’. Since our daughter was delayed in standing up and starting to walk, we thought the same was happening with Geshan as well.

When Geshan was seven months old, we got to migrate to Australia. Still he was not even rolling over on his tummy. We took him to Women’s and Children’s Hospital (WCH) in Adelaide and saw another paediatric specialist. From that day onwards, they suspected that something was not right with Geshan and started all kinds of tests to find out what it was.

On 6 October 2002 (his second birthday), the doctors at WCH confirmed that he has a severe neurological condition by the name of Pelizaeus-Merzbacher disease (PMD). We were so devastated and it was really hard to understand how and why.

For the first few months we were just like zombies, attending to our day-to-day activities but not wanting to accept the reality of Geshan. After a few months, it started to sink in and it was not the kind of feeling that some would expect. During this period, we as a family went through such hardship. We nearly split up. With all the support from the government and especially from Novita Children’s Service and their staff, we managed to tie up one day at a time. In the meantime, we started to search for answers regarding the condition. The best tool we had was the web. One day we came upon the website for PMD in America and we wrote an email with our information about Geshan. Since the blood test that confirmed Geshan’s condition was done in America and the doctors from that hospital knew who we were, we got connected with the PMD Foundation and the special group of doctors who are doing research on PMD.

With these connections, we had an opportunity to take Geshan to America for a research program. We were fortunate enough to meet a few other families who have kids with PMD. We were so happy to meet these parents at that time, as we’d had no contact with any parent who is in the same category as us and we were unaware of Geshan’s future.

Geshan’s results in this research were similar to the earlier tests done in America, but gave an in-depth view of his condition. Geshan has a mutation in his genes that has started within him. This means that he is the first with this particular mutation of PMD and he is the only one in the world who has that specific mutation in his genes. This makes it much more difficult to hope for a cure for his condition. At the moment, even though there is no cure, there is much research being done. This helps to make life far better for a person with PMD, and brings us a little closer to finding a cure.

Even though Geshan is suffering from this severe condition, he is a very lovely and playful kid who loves to travel, play rough and be noticed. He loves going to school, as he gets everyone’s attention. As parents, we are so lucky to have Geshan as our son. He gives a smile that takes all the day’s hard work away when we come home each evening.

We thank and take our hats off to Leanne and Sister Julie for giving us the opportunity to share our story with everyone and also for finding us a community in Adelaide with whom we can share our thoughts.

Shilandini (Dini) and Rohana (Roh) Wijethunge