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Hypotonia - Ariella's Journey

I don’t remember the exact moment we were told Ariella had hypotonia, that whole first year of life was a blur of seizures and screaming and hospitals-So I just couldn’t tell you, but it was in that first year.

I remember taking Ariella to her 3 month health nurse check-up. I walked in there excited about them checking over my baby because at that point she had some seizure activity, but I didn’t know that they were seizures at the time, and I wasn’t aware that anything was wrong.

At the check up the nurse performed all of the usual measurements which were fine, but then became concerned when Ariella couldn’t push up on her arms or hold her head up. This was my first baby; I didn’t know what was normal or not. The nurse referred us to a physiotherapist to start exercises to increase her strength.

Over that year we learned that she had hypotonia, she was delayed in all her milestones; rolling over, sitting up and crawling were delayed and took a lot of effort for her.

We had to watch her constantly for choking- which she did a lot because her mouth muscles were quite weak. Then add on top of this that she was paralysed every second was challenging to say the least.

That early time with a baby is so hard. That early time with a baby with any health issue is extremely hard. As mothers we watch those other babies around us roll for the first time, take their first steps, and we just try to hope that our baby will get there one day, and try REALLY hard not to compare.

Whilst Hypotonia still affects Ariella at almost 6 years old, in that she isn’t the most coordinated walker or runner, she cant open a packet of chips or take lids off things or write well because her hands are quite weak, she has learnt to live with it like a champ and rest as often as she needs. To her its just normal, and I’ll always be grateful for the fact that most of the time she can walk and run. There are children with hypotonia alone that aren’t affected to the degree that TBC1D24 kids are, for our kids its like a cocktail of symptoms that all affect each other.

So even though Ariella was and has been delayed at nearly every milestone, you know what she wasn’t delayed on? Her first smile, and she hasn’t stopped smiling since.

Check out Ariella at PT and ballet.

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