Being told your child has an illness that has no cure and is progressing, is one of the scariest things ever. To make it even more scary Alexanda was diagnosed with 3 different genetic conditions and many more medical problems. It felt like we were never going to stop getting diagnoses.

Alexanda has to be fed into his jejunum via a tube 24/7. Why? In true Alexanda style we don't know. We know he aspirates; we know he gets severe tummy pain and sickness when fed into his tummy, but this is no real answer. Alexanda has chronic lung disease called surfactant protein c deficiency and has to have several medications and 6 nebuliser medications a day to be able to function. He spends weeks in hospital.

 When we got referred to Helen & Douglas House it was yet another scary journey. In reality who wants to be referred to a hospice. Off we went to meet the team and that is when our lives changed. Helen & Douglas House opened their doors to us we've never looked back. We have truly found another family.

To be honest I am a single mum who gets exhausted keeping up with meds, feeds, appointments and everything that comes with my amazing little boy, but it is my job to do that. When we stay at Helen & Douglas House I get to turn into mummy again. Alexanda absolutely loves going and gets so excited. He loves using the spa for those bad days where he needs to rest, and he loves using all the music instruments. On his last stay he made loads of Star Wars lightsabres and the grin on his face was amazing as he was saying he was training to be a Jedi. 

Helen and Douglas House is there for us and even through the pandemic they continued to give us as much support as they could. I don't honestly know what we would do without them. 

So now I’m taking on my own challenge to raise money for them – by doing the London Marathon! Any donation you can spare will really keep me going on the day.

Thanks for your support with my London Marathon JustGiving challenge!
My page donations will be sent direct to the charity in a fast and secure way. Its efficient, saves time and cuts costs for the charity. Helen & Douglas House supports terminally ill children and their families so that they don't have to face unimaginable heartbreak alone. To keep providing the care and love these families depend on, the charity need to find over £3.4 million a year.