• 1: Home
• 2: MPS Diseases
  • 2.1: Overview of symptoms
  • 2.2: Overview of treatment
  • 2.3: Which are the MPS Diseases
    • 2.3.1: MPS I
    • 2.3.2: MPS II
    • 2.3.3: MPS III
    • 2.3.4: MPS IVA
    • 2.3.5: MPS IVB
    • 2.3.6: MPS VI
      • 2.3.6.1: Oliver's Story
    • 2.3.7: MPS VII
    • 2.3.8: MPS IX
    • 2.3.9: ML I
    • 2.3.10: ML II and III
    • 2.3.11: ML IV
    • 2.3.12: Fucosidosis
    • 2.3.13: Mannosidosis
    • 2.3.14: Sialic Acid Storage Disease
    • 2.3.15: MSD
    • 2.3.16: AGU
    • 2.3.17: Winchester
    • 2.3.18: Geleo Physic Dysplasia
  • 2.4: Personal stories
• 3: Fabry Disease
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Oliver's Story (MPS VI)

It is a few years since we walked across the hospital car park after being summoned by the specialist. We were not too worried – we had asked for tests to be done on Oliver when we realised that he couldn’t lift his arms very high. He had already been seen by one consultant who suggested he may just have a slight deformity in his shoulders. This new specialist had had many x-rays done and revealed that the radiologist had recognised the problem. Today he would tell us what the problem was. Our only fear was that he might need some form of corrective surgery – how wrong we were!

On entering the hospital, the specialist broke away from his students and took us into a small side room. He seemed very sombre. He began writing an extremely long word on the white board on the wall, but abbreviated it to MPS and within the space of a few minutes, our whole world crashed beneath us.

We heard words like incurable, degenerative, fatal, but we were too dazed to take it all in. He told us we would need to bring Oliver down to give a blood test, to be sent away for analysis. He asked if we wanted a cup of tea. We refused and within fifteen minutes we were walking back across the car park as different people. Unable to understand or comprehend what we had been told. When Oliver arrived home from school that afternoon, he was his usual cheerful, happy, energetic self, and we found it even harder to understand.

I look back now with anger on that day because the hospital sent us away with no help. I began trying to find information. I found the Royal Manchester Children’s Hospital had a specialist called Dr Wraith with whom we later had a consultation. He explained to us that Oliver did not have severe symptoms and that a treatment may be available in time to give to him in the foreseeable future. Suddenly we could see a little light at the end of the tunnel. Something to aim for, a little hope!

Over the coming years we tried, unsuccessfully, to get Oliver onto the clinical trials of enzyme replacement therapy and later to receive the weekly enzyme infusions at home. Throughout all this time we have become paranoid about his health. Every headache, every joint pain, any problems he has with his health are taken very seriously and cause us great worry, and yet these same symptoms would be almost dismissed as ‘growing pains’ in his brother and sister. We have tried not to spoil him or give him ‘special treatment’ but like many MPS parents, we are guilty of over-compensating by eating out, days away, holidays and generally ‘living for today’.

Click here to read more about Maroteaux-Lamy Disease.