My brother John and I are completing the Rouken Glen 10k on Thursday 7th June 2018 to raise money in memory of Willow May Rossi Riggans, Wonder Willow, for The Osteopetrosis Support Trust

Willow was the daughter of close friends Lousa Rossi & Steven Riggans, affectionately known as Wonder Willow

The trust provides support to families of children with Malignant Infanile Osteopetrosis. Willow’s family have received support even after her passing.

https://osteopetrosis-support-trust.org.uk/

We hope to raise more awareness for this condition to honour Willow and for other families affected

Wonder Willow’s Story

Willow May Rossi Riggans was born on 13th July 2017 at 5 weeks early, weighing 3lb 13oz. After 5 weeks in hospital due to low calcium and Vitamin D, as well as slow growth she was allowed home.

A week later she was back in for a day to have a blood transfusion due to low haemoglobin. Another week later Willow was back in to hospital again with low platelets. Again, another transfusion was needed.

Willow continued to attend hospital for weeks at a time while blood tests, scans and various other examinations were being carried out.

Following weekly hospital visits Willow was diagnosed with Malignant Infantile Osteopetrosis, a genetic condition which only effects 1 in 250,000 children worldwide.

https://en.wikipedia.org/wiki/Osteopetrosis

Life expectancy of this condition is no more than 10 years old with most children only surviving until 2 years of age without transplant.

Willow received her bone marrow transplant from for mum who was her stem cell donor, on the 12th of December. Her transplant was showing signs of working however due to her her low immunity because of the chemotherapy she developed a virus which damaged her liver.

Following 3 long months in hospital having her chemo and transplant, Willow passed away on 5th February 2018 with her family all around her and her in the arms of her mummy and daddy. Willow was 6 and a half months old.