Poppy Goodall was diagnosed at 5 months old with Canavan Disease. This is a rare neurological disease, that affects the white matter of the brain. Her family were told this is a life limiting disease, with no cure and most children not reaching their 10th birthday.
They were told that Poppy will never walk, talk, and would eventually need a feeding tube. She will likely start having seizures as she gets older too.
With less than 10 cases in the UK, there hasn’t been any research done here. However, in the US there has been a clinical trial for Gene Therapy specifically for this disease. A boy that has had this treatment in April is already showing signs of improvement.
Poppy is now 16 months old, and her family are waiting for news after Poppy's recent trial to see if she can receive the therapy needed.
We were more than happy to help at a coffee morning event organised at Jubilee Hall in Hatton, Derbyshire on 7th May by some of the family friends. We donated copies of The Adventures of Poppy and Lord Ted for their raffle and all the proceeds from my book sales went towards Poppy’s funds.
We had a great couple of hours signing books and appointed many new members of the Lord Ted Fan Club too helping raise an amazing £307.15.
Thank you to everyone that bought a copy, we hope you enjoy reading!
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