Posts by admin

Wheelchair services

From what I’ve been told a child is not eligible for an NHS wheelchair until between 3 and 5 years...

Emotional Impact of an SMA diagnosis

I think firstly it is most important to talk about the emotional impact of SMA as this is probably the...

The SMA team

At diagnosis the team of people that will suddenly come a huge part of your life seems really overwhelming, but...

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...

Kent Newspaper

Letter from David Cameron’s office

Kent Online

Article on the Kent Online: Birchington mum Charlotte Russell hopes daughter Helena will get treatment to save her life  ...

London Calling

Another trip to London today to Evelina children’s hospital. Continue to love the team of doctors Helena sees at Evelina...

SMA in simple words

My earlier post in super simple terms: we all have 2 smn1 genes, one from our mum, one from our...

How does one get SMA?

Many people have been asking me recently about how SMA is inherited. We had no one in our extended family...