In a heartbeat

Kade is over 3 months post ivig. Thanks to Dr G my son has more energy, he enjoys cooking, going to his tutor lessons, playing his computer and visiting relatives. He even went to a show at the Playhouse in Edinburgh with his Nanny, something a few months back I never believed would have been possible. The League of Gentlemen, to hear how my son laughed brings me pure joy. Carefully navigated by my mum they got there with the very least amount of walking possible.

I wake Kade around 11 each weekday, he does some school work at home or goes to his tutoring sessions. He will be doing 3 national 5s as that unfortunately is all I can afford to pay towards him being tutored for. Before all of this began Kade was an extremely bright boy and while he is still very bright I can see he struggles mentally with processing his thoughts and putting them on paper.

Kades chest pains when walking really are the one thing stopping him having access to his full life, the life he had while receiving 4 weekly ivig was a huge contrast to the one he is leading now. When he walks he has a squeezing pain in his chest he can point to the exact location of the pain, his joints in his elbows and neck also become stiff along side the pain, he becomes breathless and there for unable to continue on. What frustrates me the most is I know for a fact these pains go away once he receives his ivig treatment. Due to national shortage and his treatment being withdrawn he just has to suffer?! A child in pain is a difficult thing to watch, and for him you can times that difficulty by the biggest number you know.

When Kade was receiving his monthly ivig he was attending school on a regular basis, socialising with friends and feeling like he was part of society. This is very important to him, to be forgotten about, I know is his biggest fear.

Last week he received a few tests on the children’s ward which showed no reason for his pain. So we are again in limbo, waiting to hear what happens next. All I know is my son cannot go on living like this as it is going to affect him not only physically but mentally too. For me he deserves the right to appropriate investigations and treatment and I will make sure this is what he gets. One way or another I will fix this, again like last time. For me there is a reason for everything, nothing that is happening to Kade cannot be treated, I have seen how well he can be with treatment so something needs to happen sooner rather than later. It is now September and time is passing far too fast. He will be 15 in two months time. Almost 3 years lost to this disease, it has left a trail of destruction in its path that I will never be able to describe in words.

We need more doctors to show an interest, more doctors who can think out side of the tiny little boxes our kids are left to rot away in. The suffering is intense and its daily, children cannot access the basics of life like friendship and fun, they do not access the building blocks that make them who they are and give them the sense of self and identity. By not medically helping these children their mental health takes blows on a daily basis which I think everyone would agree is no way to live.

The biggest issue I have is no one actually knows what is wrong with my child but his treatment has been withdrawn regardless.

With appropriate treatment my son lives, with out it he survives in a world that I will never truly comprehend. If swapping places with him was an option, I would, in a heartbeat.

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