What Vimizim means to Harvey?

What Vimizim would mean to Harvey

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We are mummy and daddy to six year old Harvey. In December 2013 our world was turned upside down when Harvey was diagnosed with MPS IVA Morquio. Due to this late diagnosis he missed out on the trial for Vimizim.

Harvey is a bubbly, fun loving little boy with so much to offer. However his disability limits his physical being. He has to have assistance with everyday tasks such as washing, dressing and toileting. He is unable to join in with alot of activities as he does not have the energy or stamina to take part. Harvey hangs back when other children are around in case he gets hurt. It breaks our hearts when we attend children’s parties and he stays with us as the other children are running around, jumping on bouncy castles or playing football because he feels it would put himself at risk.

Harvey has sight, hearing and breathing difficulties and his joints are now becoming more rigid. He often complains of back, hip or knee pain. He also tires very quickly, for instance if we have a day trip out he will spend most of the next day sleeping. He comes home from school exhausted and has even got to the stage where he often has to have a lay down in the afternoon at school. Frequently during the night we are awoken to Harvey crying because he has pain in his hips or back. He also suffers with sickness as this is the only way he can clear his system of phlegm.

Harvey loves football and up to 6 months ago was able to kick the ball around with his dad, lately however he can only manage a short period of time before he complains of aches and pains. He uses his wheelchair more often as he can only manage to walk short distances as he also gets short of breath. We find it difficult to go on journeys in the car as he cannot sit for too long and his wheelchair has the same effect.

As parents to Harvey we are devastated that our precious little boy has to suffer so much pain and discomfort when there is a treatment that works but is not being made available. We are extremely angry that our baby’s life is not important enough for the treatment to become available to him. We are losing faith in our country and health system knowing that if our son was born in France, Germany or many other countries, the treatment would be funded. We find this offensive and discriminating as self inflicted illnesses have funded treatment. Where is the justice for Harvey or his human rights? We are disgusted that the children and young adults that are on the treatment are having it taken away after they have felt the benefits and improvement to their lives. It’s a disgrace.