My five-year-old son Oliver has not had an easy life. He was born by emergency C-section and when he was passed over to me he had a nasty rasp to his breathing. He was quickly taken away from me and rushed into the neonatal intensive care unit.
The medical staff concluded that he had Laryngomalacia – a softening of the tissues of the voice box above the vocal cords. So when he was only 20 hours old he was rushed off for surgery to trim the cartilage around his larynx, which was the scariest and most worrying thing I had ever experienced.
After just a week in hospital Oliver was allowed to come home.
It wasn’t until he was four months old that my wife, Vickey, started to notice that Oliver wasn’t meeting his milestones. He started having Dystonia, meaning his muscles would contract uncontrollably.
Yet it wasn’t until he was 13 months old, when he lost all power in his left arm, that we were able to get people to take notice and start investigating. He spent almost four weeks in hospital and had various tests but we ended up leaving the hospital with no answers.
18 months later and after numerous blood tests, visits to A&E, MRI scans, X-rays, specialist consultants and geneticists, we finally received a diagnosis of Alternating Hemiplegia of Childhood (AHC). This is a neurological condition that effects less than one in a million people, and not even all neurologists have heard of it. At the end of this blog I’ve included some more detailed information for anyone who is interested.*
AHC causes weakness in any muscle in the body, from arms and legs to breathing and swallowing. You never know when an episode will happen or how long it will last, and whether they will fully recover or suffer permanent muscle damage. As each child is so different with this condition, a treatment or medication that works for one will not necessarily work for another.
There is no cure.
Oliver also has Dystonia and has been diagnosed with Global Developmental Delay, Sensory Processing Disorder and is being investigated for Epilepsy.
One thing that has had a profound impact on Oliver’s wellbeing, and mine for that matter, is parkrun. Vickey started bringing Oliver to watch me run at Southampton parkrun and he loved it. He is very sociable and enjoys interacting with people, so seeing hundreds of people running just made him smile even more.
I vividly remember the first time Oliver came to watch me run. He was so excited and kept clapping all the runners as they went past. I had recently set a new PB and decided the following Saturday I would try running with Oliver in his wheelchair to see if he would enjoy it. I wasn’t sure how or if it would work, but we tried it anyway and Oliver absolutely loves it. He thinks it’s hilarious when people run past us and he starts clapping for them, and he also likes it when we pass people so he can reach out for them. We even get a few people saying hello to him by name now (ignoring me!) which is great as it makes it even more special for him. Saturday is now firmly entrenched as ‘parkrunday’ in our household.
For a long time we were aiming to run the course in less than 30 minutes, and last month with the help of a pacing event at Southampton parkrun we finally made it. We were both absolutely chuffed! We have now completed 11 parkruns together, with a PB of 28:51, and Oliver has enjoyed every single one.
parkrun has really helped me to enjoy my own running too. It’s such a positive environment with young and old, other parents with their children in buggies and Oliver and I with his wheelchair. All travelling the course together. It doesn’t matter if you finish in 16 minutes or 60 minutes, everybody has a sense of achievement.
Prior to last year I had never been a runner, and knowing I could hardly run for five minutes let alone 5k resulted in me putting off trying for quite a while. Eventually I signed up for the Gung-Ho 5k on Southampton Common and roped in two friends. I used the Couch to 5k app to make my start, never believing I would ever be able to run constantly for 30 minutes, but after several weeks I made it.
Vickey then told me about Southampton parkrun and I started going along when I could. Little did I know just how supportive people are, how much they want to push you, and how they want to help you finish. I regret not going along to parkrun sooner, and I would say to anyone who is unsure to just go along once and try it. Chances are you’ll think it’s brilliant from the first moment just like I did.
One person who I know will enjoy parkrun from the first minute is my daughter Alisia, who keeps asking if she can come running with Daddy. She is three years old so hasn’t got too long to wait until she receives her very own parkrun barcode on her fourth birthday!
Vickey isn’t able to run following knee surgery unfortunately, but I’m counting down the days until she can take a photo of Oliver, Alisia and I crossing the parkrun finish line together.
*What is Alternating Hemiplegia of Childhood (AHC)
It is a condition that causes weakness of either, or both, sides of the body. Attacks usually start in the first 18 months of life (hence of Childhood) but continue throughout life and the earliest episodes are often unusual irregular eye movements.
The attacks can last from minutes to hours to days or even weeks. When the attacks are prolonged the manifestations are not apparent during sleep or for the first fifteen to twenty minutes on waking when they then return. This is a very characteristic finding and when there are bilateral attacks, this may allow feeding and drinking to occur in that short clear period after waking. The episodes of hemiplegia are not epileptic in nature but epileptic seizures also occur in about half of those affected and require separate anti-epileptic drug treatment.
Everyone effected by AHC have different symptoms and have different triggers. Some common ones are as follows:-
Water – bathing and swimming.
Changes/extremes of temperature.
Bright lights and loud noises.
Fluorescent lights/Low energy bulbs
Strong odours(Perfumes etc)
Childhood illnesses and infections.
Tiredness and lack of sleep.
What’s the treatment?
Currently there is no cure for this little known condition. The treatment most commonly used is flunarizine (a calcium channel blocker). Other drugs have not been found to be consistently helpful.
Management is complex because of the multiple impairments and episodic deterioration. Bilateral attacks (those that occur on both sides of the body) may pose hazards for nutrition, hydration and breathing.
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