Addy is 4 years old. She's amazing.
She has been diagnosed with a rare, terminal disease known as Batten's Disease. There are presently only 100 children worldwide known to have this disease.
Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.
Following surgery, she will need to travel to Great Ormond Street Hospital to receive treatment every two weeks for the rest of her life, which may only be another 4-6 years. Heartbreakingly, the disease will limit her life to between early childhood and young adulthood at best.
This funding campaign seeks to help Addy and her family, (Dave, Hayley and Samuel) in supporting them in a significant financial challenge. Funds are needed both immediately and ongoing for two specific areas:
1. The Cost of Travel
The fortnightly travel from Swindon to London is an economic burden - taking away the opportunity to work on that day and costing up to £3,600 per year.
2. Move to a Bungalow
The difficult but necessary decision to move house has been taken. A shortfall in finances has been identified and we are looking for support in plugging the gap between their house value and an appropriate bungalow. You can read more details about this in the campaign updates.
There are also implicated future costs for home environment adaptions and education. Alongside the emotional and practical impact on the family life, the economic strain will increase as parents lovingly take on a full time caring roles.
This is our chance to help practically. Please be generous to a family that has always been generous to others.
- Sylwia Rasinska
- Chris Priddy
Organizer and beneficiary
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