Spotlight on AHC Champion Patrick (Indonesia) by his Dad Tom

Spotlight on AHC Champion Patrick (Indonesia) by his Dad Tom

AHC Champion Patrick-Indonesia

Patrick Way, now 8, was born in Surabaya, Indonesia, in March 2008. I’m English and French, and my wife Darlene is Chinese-Indonesian, so Pat is a right little mix!

Pat was hitting all his developmental milestones until he was 9 months old when suddenly my wife and I were thrown in to the world of AHC. Frightening eye movements and full body paralysis were followed by a number of days of hemiparesis. The hospital in Surabaya believed they could see a clot on his brain that had caused a stroke (this later turned out to be a spec of dust on the image). With our world in turmoil and fearing the worst we rushed him to the medical excellence of Singapore.

The neurologist we were recommended to, Prof Low Poh Sim, head of pediatric neurology at the National University hospital, was fantastic. She immediately dismissed the stroke theory and tentatively proposed an epilepsy diagnosis, but as a number of symptoms seemed irregular, she continued to explore other possibilities.

With the initial epilepsy suspicion, Prof Low Poh Sim prescribed Topamax which Patrick responded to quite well with a reduction in the frequency of episodes – he was experiencing bad ones daily at that point. But within two months she came back to us with a number of research papers she had found and a new diagnosis: Alternating Hemiplegia of Childhood. Later, DNA testing confirmed a de novo ATP1A3 mutation, the most common mutation among the AHC champs.

We added flunarizine to his meds and there was an even greater improvement with a decreased severity of episodes as well as frequency of episodes. Over time, we cut out the Topamax altogether because the flunarizine seemed to be doing the job better.

In these early days, Lene and I felt helpless. There was little information on the web and we could find no other families in Indonesia with the same condition. Thankfully we came across contact details for Jill Bailey in the UK and the support she gave us in the early months helped relieve the uncertainty and gave us the strength to continue. As the internet, and especially Facebook, has become more central in daily life, the AHC support community has increased and now we include families all over the world as part of our personal support network: it’s impossible to discount the positive impact of social media in helping AHC parents.

A pattern established with regards to Patrick’s episodes. We usually experience around 5-7 days episode-free where Patrick is able to walk and he makes strides in his overall development. Following this there are a few weeks of on/off hemiparesis where he is often in a chair of some sort, and then a week of very bad full body episodes that are incredibly painful for Pat and heartbreaking for us.

When someone asks me to describe a bad episode it can be hard to put in to words. I sometimes say, ‘Imagine you have cramp in every muscle in your body. Not only your limbs, but every muscle. Your stomach muscles, all the little muscles in your hand and fingers, all at once and sometimes for days at a time.’ There have been periods when we have held Patrick in our arms all day, listening to only his cries of pain, and the sounds of his joints cracking due to the force of his muscle contractions, while we try to comfort him.

Despite his condition, Patrick absolutely makes the best out of life. He loves riding horses, adores animals generally (we’re lucky to have a good Safari park down the road), loves computers and his iPad and clearly loves the family and carers in his life. At the moment, he is particularly fond of Star Wars and currently refuses to respond unless we call him R2D2 or Boba Fett (depending on the day of the week). Today, Saturday, is a Boba Fett day.

We are lucky to have amazing familial support. Patrick’s grandmother and aunty live a few minutes down the road and Indonesia itself has such a family oriented culture that they play a huge role in looking after him after school while Lene and I are at work. His school has also been fantastic.

At present he goes to a regular International Baccalaureate primary school, which is ideal because of its focus on enquiry about the world around us rather than curriculum prescribed objectives to meet each year. Because of this he is able to work at his own level among similarly aged friends who are extremely supportive and understanding. He has an assistant teacher Yennie, who works with him one to one along with his classroom teacher Ms Intan, and additional support from a Special Education needs team. They are a super crew!

Aside from AHC Patrick has to deal with ADHD, for which Ritalin helps, and occasional behavioural outbursts. Establishing routines help with both focus and behavior, and we have seen remarkable changes in both this last year, following the consistent support provided by his teachers. We don’t think Patrick has epilepsy (I’m gripping the edge of the wooden desk here) but there have been a couple of more frightening episodes recently that culminated in reduced consciousness and these are as yet unexplained.

The prognosis for AHC is not good in the available literature. We are realistic about this and Patrick’s future. We take every opportunity to ensure Patrick has positive experiences now, while he is young and relatively mobile, realizing this may not always be the case.

Having said that, there’s also a lot to look forward to. The research that Cure AHC and others are doing is bringing us closer and closer to treatment options, and global advances in gene therapies like CRISPR offer real hope for a cure within Patrick’s lifetime.

Being a parent of a child with special needs is hard. It changes your life in every way for as far as you can see in to the future. I’m sure we all have our little tricks to get through the bad days. One realization that I had recently, and which I am trying to put to use, may be of benefit to others: Empathising with Patrick, to the point where I felt every moment of his pain could be paralyzing. It was exhausting and depressing. Because of this I’m sure it also prevented me from doing the best for him, and for myself and everyone else in my life. My realization is that acts of compassion do no require this level of empathy. By accepting that I cannot change his situation simply by feeling his pain, I’m better able to set goals for practical things that can help him.

Please donate to Cure AHC! For parents, we would be very happy for you to make contact with us if you wish. Jeff at Cure AHC can provide our details.

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