Our beautiful Freya was born 12/7/23 at Liverpool Women’s. There were complications at birth and Freya had to be resuscitated for several minutes. Once stable, Freya was taken straight to Intensive Care and stayed there for 5 weeks before we could bring her home. We found out at two weeks old that Freya has a very rare genetic syndrome (1 in 50,000) called Wolf Hirschhorn Syndrome.

The tip of Freyas 4th chromosome is partially deleted - it has been confirmed as a ‘de novo’ mutation which means ‘a change in the DNA sequence of a gene that is seen for the first time in a person and has not appeared in previous generations.’

We were completely unaware that our baby had this syndrome throughout pregnancy and had no idea of the additional support Freya would need.

Due to this syndrome, Freya will have various complications throughout her life, having already experienced so much for such a little baby.

Over the last 7 months, Freya has attended countless appointments, scans and therapies at Alder Hey and is currently under the respiratory, nephrology, cardiology, ophthalmology, neurology, physiotherapy and speech and language consultants at this hospital.

Freya has received amazing support, care and treatment from the consultants at Alder Hey, in particular, Dr Sinah, who helped wean Freya from full time oxygen requirements and has gone above and beyond supporting us with other additional worries.

Throughout March I will be walking/running 50km to help raise money for this wonderful hospital. The money I raise from the 50k Challenge is to help go towards the cost of the new children’s cinema at Alder Hey, to give the children who need to undergo treatment there the chance to watch the latest movies within the hospital grounds - providing joy, excitement and some normality to their lives.

To us, taking our children for a fun trip to the cinema is something we can do quite easily, but for the children who sadly need around the clock care at hospital, it’s just not possible.

By donating to this cause, you are helping raise money for a project that will bring so much happiness to all the children under the care of Alder Hey.

Thank you for donating - Joanne x x x