Let’s get Sophia moving

Dear all,

As some of you will know - Sophia (our daughter) had gene therapy to treat her Spinal Muscular Atrophy. (For those who don’t know - SMA is a muscle wasting condition which without treatment is terminal.)

Unfortunately, the side effects including life threatening liver injury forced Sophia to stay in hospital for several months bed bound. Even when she came home her physical activity was limited until recently. This all has taken toll on her muscles, especially those supporting her spine. We now facing another battle of building up her strength and rehabilitation of her muscles to maximise the positive impact of gene therapy. We do a lot of daily physio, but without regular professional input, we just stumbling from one problem to the other.

Our long term plan is to offer Sophia at least a weekly sessions with private physio (more if funding allows) to enable the best possible rehabilitation process. In addition to that we will also have to purchase physio equipment, hydrotherapy, wheelchairs and build a dedicated physio space. With £80 per physio session session (1hour), we cannot maintain physio independently in the long term. (In the original post we thought it was £100 per session, but as we got updated price of £80, we reduced the goal to remain transparent.)

As much as it embarrasses us, we are asking for help once again from community. We realise that cost of living has impacted everyone in many ways, so please do not feel bad if you are not able to assist financially, all we ask is that you share this fundraiser so we can reach as many people as possible.

In the world where fraud is frequent, we wish to be transparent. Sophia’s journey is well documented in her Facebook profile, but if anybody has question or doubts about authenticity of her needs, please feel free to reach out and ask. In addition we will keep all receipts which can be viewed upon request by anyone who is interested to see how all the money donated is spent.