Spotlight on AHC Champion Oliver (Spain)

Spotlight on AHC Champion Oliver (Spain)

 

AHC Champion Oliver and family

Oliver was born on July 1st 2015 at 13h30 weighing 3390g. Two minutes later his twin sister Charlotte was born weighing a mere 1955g. As I was taken to intensive care for observation after my platelets dropped, Ollie and Lottie as they are now fondly known, met their father and grandmother. On their second day of life, Ollie was rushed off to intensive care when the paediatrician noticed hypertonic movements. He was in an incubator for the next 5 days. The 4 of us finally left the hospital on July 7th on a very hot summer’s day. And so began our adventure raising twins. We knew it wouldn’t be easy, but we had no idea of what was to come…

We first noticed something different about Ollie when he wasn’t reaching certain milestones at the same time as his sister, or not at all. Initially we put this down to his hypotonia and took him to weekly swimming and physiotherapy classes. The paediatrician had also noticed slight nystagmus, but nothing alarming. As the months passed, Ollie slowly made progress and started to catch up with his sister. Then one day over Easter 2016, within a couple of days he seemed to have gone back to square one. From one day to the next he became completely hypotonic, had a lot of nystagmus, a faraway look and seemed to be uncomfortable and only consolable in one of our arms. We rushed him to hospital where he stayed for the next 2 weeks while a team of doctors ran several tests on him, including blood tests, an electroencephalogram, a lumbar puncture, etc. With each test that came back negative, we sighed a sigh of relief. The days in the hospital were mentally and physically draining. We were anxious to find out what was wrong with Ollie and also wanted to leave the hospital and get back to normal. One day a group of neurologists came to see Ollie and one of them noticed one side of Ollie’s body was not moving. They checked all the tests and did a few more and a couple of days later we left the hospital with a diagnosis of suspected Alternating Hemiplegia of Childhood.

We left the hospital with little more information than the name of a rare disease we had never heard about, a prescription for flunarizine tablets, and the assurance that as soon as we had the DNA blood test results, we would know whether Ollie was one of the one in million affected. These results took another year to come through. Meanwhile we carried on as normally as possible. We continued with physiotherapy, but stopped our Saturday morning swimming routine as Ollie had had a couple of tonic attacks and nystagmus during or after these classes. After a couple of months, we had a routine check-up with the neurologist and learned that there was no cure for AHC and very little we could do, except try to detect what triggers the episodes and then try to avoid these situations. Over time, we noticed that Ollie would suffer hypotonic attacks in the incubation period of a viral infection, be it a cold, an ear infection or bronchitis. This is something we found very difficult to avoid, especially at his age and exposure to all kinds of viruses at preschool. Another trigger seemed to be when he was constipated. This is something we have managed to keep a little “control” a little better by keeping a closer eye on his bowel movements and his diet.

Through all of this, Ollie’s sister Charlotte is key. As she grows and develops, she becomes more and more aware of Ollie’s limitations and is conscious of his episodes. She is also a wonderful stimulus for Ollie, who will follow her around at his pace wherever he can. And, I am convinced that the love they have for each other does Ollie the world of good, even if the overexcitement when they play sometimes provokes some nystagmus. We have also been very lucky with fantastic support from family and friends, as well as the preschool and our respective workplaces. From the moment the neurologist confirmed Ollie has AHC, we joined the Spanish association of AHC (AESHA) and threw ourselves into raising awareness and funds for research as much as possible. This is now our mission and we will not give up until there is a cure for AHC.

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