Hope mixed with Heartbreak

Today the Scottish medicines consortium made the decision on the approval of Spinraza in Scotland. Spinraza is the first ever treatment for spinal muscular atrophy. The decision: Spinraza was approved for those with sma type 1. My feelings about this decision are very mixed, I won’t pretend to understand the politics behind this decision nor do I have any medical knowledge – I’m just a mum who deals with sma on a daily basis and so these are my thoughts & feelings on the decision.

In some ways this news is incredible – it is a miracle that there is a treatment for a muscle wasting, life limiting condition and that families with a type 1 child (like Zac) will have access to treatment but in other ways this news is devastating – those with sma types 2&3 have had their hope destroyed as treatment has not been approved for them. Sma is a muscle wasting condition and so over time a person will become weaker & weaker, Spinraza aims to stop that progression and has had amazing results in clinical trials!

Zac was diagnosed with sma type 1 at 17months old after a very long road of appointments, tests and waiting lists. We were extremely blessed to be granted access to a compassionate access program which saw Zac start treatment just two weeks before his 2nd birthday. Before this treatment started we watched sma progress: we watched our baby lose the ability to roll over, we watched his legs stop moving, we watched him lose the strength to pick up toys, we watched him struggle to hold his head up and we watched him fight to breathe in times of chest infections. You won’t often hear me talk about the reality of sma – it’s a place I won’t let my mind wander to as I stay positive in every thing we face but the reality is that without this drug I would’ve watched my baby struggle more & more everyday, I would’ve watched him lose the ability to move any part of his body, I would’ve watched him lose his voice, I would’ve watched his smile fade and I would’ve watched his chest fight a losing battle. This miracle drug has been approved for Zac and others like him and so my heart is filled with happiness at the life line that has been given to him but it has not been approved for everyone. My heart is breaking for those who are watching the losing battle and feel like the hope of treatment has been snatched away from their hands.

Yes this drug is very expensive and would cost a huge sum to treat everyone but who can put a price on life? Who gets to decide what lives are worth paying for and what ones aren’t? Isn’t it human instinct to fight for life? To face challenges and come out stronger? To cling on to every last bit of life? I’ve watched my son fight with every fibre in his body, I’ve watched him cling to every bit of strength he has to survive and in those moments I’ve prayed with every fibre in my body for a miracle, I’ve held on to every bit of hope. My son is a sma warrior and there are others like him who also fight everyday to preserve as much strength as they can, they cling on to every bit of power they have – surely it’s in our human nature to preserve life no matter what the cost? Surely everyone deserves the chance at this treatment?!

Our miracle happened – Zac is receiving treatment and in the last year instead of watching him lose strength, I’ve watched him achieve milestones I never thought possible! I’ve watched him start to roll over again, I’ve watched him gain the strength to pick up his cup, I’ve watched him splash his legs in the bath, I’ve watched him swing his legs, I’ve watched his head get stronger and his head control improve, I’ve watched him learn to drive his power chair – these milestones are precious and priceless.

So tonight I struggle with the decision: hope and heartbreak, my hope is that the decision is a positive starting point, a starting point that leads to treatment for all. I will continue to fight, continue to raise awareness, continue to believe for a miracle that one day everyone who needs treatment will have access. I will continue to have hope and I will continue to take each day at a time in my “different kind of normal”.

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Rachel House – a special place

Last weekend we packed up all of Zac’s equipment, medicines and daily routines and took shelter at “Rachel House”. Rachel House is part of chas and is a children’s hospice. I know when you hear the word “hospice” you think sad, heartbreaking, upsetting and yes sometimes these feelings are there but when you walk through the front doors of Rachel House the overwhelming feelings that surround you are happiness, peacefulness, it feels like family, it feels like a refuge, it’s a place where you can breathe, it’s a place where life is truly lived!

We walk through the doors on Friday night with our mountains of luggage and we are welcomed by the nurse who will be looking after Zac. These nurses are a special kind of people – you actually forget your child is getting cared for by a nurse because they feel more like family and they look after your child exactly to your wishes. They all have such a special ability to just fit in with you as a family – they know when you need a moment, they know when to be hands on, they know when to talk and what to say and they know when you need quiet . They know how to make every little thing fun like having a bath becomes a big bubble splashy bath, chilling with a movie becomes a big cinema event and bedtime becomes a library of stories! These nurses are there to look after your child but in doing so they look after the whole family!

Zac gets his own room laid out with everything he needs, we get our own room too – a little place to chill! For two nights we can sleep, someone else is listening out to reposition my baby, for two days we can eat & enjoy our meals, someone else is worrying about the feeds my baby needs, for two days I can just enjoy the days, someone else is watching the clock for medicines & treatments, for two days all I have to do is enjoy my family!

During the weekend we visit the cafe & park with Caleb, we take a walk through the town and I spend some precious time with my biggest boy. Back at Rachel House Zac has been enjoying crafts, movies, bubble jacuzzi baths and is having a blast! In the afternoon they have a baking activity & Caleb takes part with another boy – nothing is too much trouble & every activity is made suitable for everyone to join in – the electric mixers have been adapted with a switch so that all the children get a shot at mixing. I sit down to read my book and the chef has just filled a plate with home baking – he tells me to help myself & chill!

Saturday night – usually means takeaway & tv but thanks to a lovely volunteer who comes to babysit Caleb we have the option to go out!! A night to be us again. Sunday morning is spent with more relaxing family time – the boys play snooker, decorate a cake, roll around in soft play and just enjoy hanging out! Then it’s time to leave….

It’s time to leave this little haven where actually we’re not any different to anyone else. We walk back out through the front doors and we feel so humbled that people would give up their own weekends so we could enjoy ours, we feel refreshed, we feel relaxed and we feel ready to go out & back to our home, our “different kind of normal”.