In June of this year my 2 year old daughter Leila was diagnosed with a neuroblastoma stage 2 and opsoclonus myoclonus syndrome (OMS). Within a few weeks of diagnosis, she had surgery to remove 95% of the tumour which was coming from her spine into her thorax.

OMS is an extremely rare condition. Only 1 in a million children who suffer with neuroblastoma will also suffer from OMS. Leila is currently receiving chemotherapy and high dose steroids to hopefully reduce and kill off the remaining tumour and also help her OMS symptoms. When Leila has a viral infection, a cold or even is just over tired it can affect her terribly. This means she is often unable to keep her balance or walk, meaning she has a lot of accidents, she sometimes finds it difficult to feed herself, and her behaviour and sleeping habits go completely haywire. Being just 2 years old she does not fully understand what and why this is happening to her, and she gets very frustrated and upset with herself wondering why she can’t do the things she used to find so easy.

In June when we initially found out what was wrong with Leila I was 32 weeks pregnant and as any parent probably would, I found this time extremely difficult. The last 6 months has probably been the hardest period of my life, but there have been 3 charities that have really helped us as a family throughout this period.

The Rainbow Trust Childrens Charity helped us look after Leila and her baby sister Esme at hospital appointments, at home, and have generally just been amazing. Not having a lot of family close by to help this has really been invaluable.

Children With Cancer Fund have given us so much support over the phone, food vouchers and even a ‘big girls bed’ for Leila which she was so happy about as it was her ‘wish’ to have a big girls bed.

Dancing Eyes Syndrome Support Trust really helped my husband and myself with advice and information about this horrible syndrome. They have been a constant source of support through the many dark days we have had. They have even set up a regular weekend for all UK OMS warriors to meet up and talk, as this is such a rare disease it is very difficult to find any sort of information about it so this weekend where we can meet and talk has been a great comfort to us.

In order to try to give back something to these wonderful charities that have helped us so much, so that they can continue to help families like us, myself my sister Grace and my brother Patrick decided that we would run the Brighton Marathon to raise money. Our plan is to raise as much as possible and then split it between these 3 charities. We have set a target of £3000 but would really like to exceed this if possible. Please help us reach our goal!!

Georgina Crabbe

Rainbow Trust Childrens Charity,

Children With Cancer Fund

Dancing Eyes Syndrome Support Trust