Information For Other Parents. Useful resources

Firstly I should say that I don’t expect the things that we have found or that have worked for us to work for everyone as every child is different and indeed every child with SMA is also different, but when Helena was first diagnosed we found that a lot of information for day-to-day living we had to find out for ourselves mostly from other parents, so I hoped that by starting to compile a resource for other parents it may help at this time where there is so much to learn and it all feels a bit overwhelming.

I’ve tried to break the information down into sections and will add as we learn more ourselves to try and keep it up to date and full of useful information.

Some sources of information are listed below with links to particular pages that may be helpful following diagnosis:

  1. Access SMA Support UK.

SMA Support UK is a great resource to offer support and advice. SMA support UK has outreach workers who can support you and visit you in your own home. SMA Support UK also offers a gift package to newly diagnosed families containing toys suitable for those with type 1 SMA.

2. Join the UK SMA patient registry.

If you are interested in accessing clinical trials joining the UK patient registry means that you will be contacted if there is a clinical trial for which your child is eligible.

3. Download emergency care alert cards.

Unfortunately neuromuscular conditions are often mismanaged in emergency situations, especially at local hospitals where they have little experience with rare diseases. Downloading a copy of the SMA emergency care cards will give you a point of reference to offer health care professionals, so that you can feel confident they are taking the appropriate steps to give your child the best care.

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