The NHS is great, but unfortunately they are in crisis and can’t fund everything that will be needed to care for a child with SMA. Also, disability equipment is extortionately expensive. So fundraising is likely to be needed to fund all the things you are going to need. For example, for Helena, they are providing her with a special needs pushchair, but don’t supply a sun canopy hood or raincover. In my opinion the pushchair is pretty much unusable in most weathers without these things and I’ve been told that they could cost almost £300 for us to buy. We are also keen for Helena to be mobile as soon as she is able and the NHS don’t supply electric wheelchairs until at least 3 years of age (5 in some areas) and this will cost us almost £24,000 to buy. So, fundraising is needed.

There are certain charities and grants that you can apply for to help with funding and your keyworker or community team may be able to advise you about these. When setting up your fundraising you cannot set up a registered charity and these cannot be set up for individuals fundraising, but you can open a not-for-profit business fundraising account at your bank. This involves filling out some forms and nominating some other signatories on the fundraising account.

Once you’ve done that you can bank cheques made out to that account – in our case “Help for Helena”, people can make BACS transfers to it or you can go and deposit cash yourself. We also use online fundraising sites for particular events that we host. We have used justgiving, but be aware that the pages set up only last for 1 month (hence why we use them for particular events) and justgiving take 5% of all the donations made.

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