Happy 1st Birthday Helena

It’s been a busy month for Helena. Unfortunately she deteriorated in terms of her range of movement, she can no longer lift her upper arms off the ground, she seems to struggle a little more to turn her head when lying down if it’s really far round, she’s lost a bit more of her stability and requires more support to sit upright and she appears to be coughing more often. She also had another sleep study which has found that she “pauses” her breathing during the night, but as her oxygenHelena 1 and carbon dioxide sats remain ok, we have yet to discuss the significance of this with her respiratory consultant. Helena’s neurological consultant is looking into some additional stabilising ideas that I have discussed with him. Helena is going to get a “stander” in order to be able to spend some time in an upright position, believed to help bone strength and circulation. Helena’s physio has said that Helena is starting to display some tightness in her ankle joints. I have launched the parliamentary petition to ask the government to appeal to the EMA and FDA to end the use of placebo controls in current nusinersen trials to enable compassionate use of the drug by all with SMA and this has received over 500 signatures already. Excitingly we also celebrated Helena’s first birthday, something we know not all SMA parents get to experience with their little ones, so we are especially thankful for this. Helena’s language skills continue to develop nicely and she’s getting pretty good at her animal noises too. Helena’s Nanna and Grandpa have filled up all the tables at their “Help for Helena” fundraising dinner event. Helena’s Nanna has also reached the half way point on her sponsored slim to lose 2 stone and has now received her 1 stone lost certificate. We have another article in the local KM extra newspaper this week and I have placed an order for “Help for Helena” badges, which I will be selling soon for anyone who would like one.

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