This fundraiser has been organised in the hope that Gabriella, who has just turned 8 years of age, can receive a potentially life saving treatment for a nano-rare disease called DRPLA.

Gabriella’s Mum, Zoe, learnt in May of this year that Gabriella had inherited the condition, DRPLA, from her birth mother. Zoe adopted Gabriella at 10 months old as a single person who was trying to help a little girl in need of a loving home, and is devastated by the diagnosis.

DRPLA, (Dentatorubral-Pallidoluysian Atrophy), is an inherited neurological condition which causes learning difficulties that become progressively worse, including epilepsy and changes in behavior. In addition to this, abnormal movements and difficulty with co-coordinating movements will occur, but ultimately Gabriella’s condition will worsen leading to her demise at a very young age.

Although adults are also affected by the condition, they don’t suffer as badly as children; but as the disease goes down from generation to generation it starts earlier and becomes more severe.

The organisation, CureDRPLA, based in both the USA and UK, together with the charitable drug company N Lorem based in the USA, have funded research into developing a drug to combat DRPLA and this is now available for trial in the United States.

It has, so far, been trialled on two patients with promising results.

There is currently no drug available within the UK for this condition and, due to red tape, there is currently no time line in terms of when this drug will be available here in the UK. The earlier the drug is administered, the more likely there will be a better outcome.

Although the trial drug is free, the cost to administer the drug and the cost of the required aftercare is very expensive. On top of this, Zoe and Gabriella will be required to spend 3 months in the USA, which is a condition of the trial. This cost is currently outside of Zoe’s financial limits as she is a single mum to Gabriella.

Any donations raised will go directly towards Gabriella’s treatment and the cost required in order to get her to the USA as soon as possible. Unfortunately, time is not on their side.

Any support enabling them to reach their goal for this potentially life-saving treatment will be gratefully received.

Thank you to everyone who has already supported them emotionally on this journey.

Thank you, from the bottom of our hearts,

for any financial support you can donate towards this cause.

Please share with your family and friends.

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