Based on her own experience, MPS Society member Emily shares a list of items to include on your packing list and thoughtful tips to make your hospital stay more comfortable and less stressful.
When Arabella was 14 months old, she was diagnosed with MPS I Hurler. We never had any particular concerns about her health, so the diagnosis came totally out of the blue. Until then, the only hospital stay Arabella had experienced, were the first two nights after her birth. Suddenly, we found ourselves facing a very long time in hospital and we had no idea how to prepare for it.Â
Those first few months after diagnosis were really hard. Along with all the tests and assessments that come at the start of this new life, we waited for a stem cell match and travelled each week for ERT (Enzyme Replacement Therapy).
There are so many questions that go through your mind, so many things you have to learn about MPS and on top of that you have to figure out what you need to pack for an unspecified amount of time in hospital.Â
In our case that was over 200 miles from home. Through social media we talked to some other families in a similar situation and there were some recommendations passed around which we all used to help us plan.
But we wished there was someone who had done this before us who could share some advice.
And so, including recommendations from those wonderful families we met at the time, we have worked with the MPS Society to create this guide.
We hope that it makes things at least a little easier for anyone planning a long hospital stay.
