Our little girl Matilda’s battle with rare Batten Disease

Our daughter was born in 2011, seemingly a healthy, happy baby. She developed normally, becoming a toddler and little girl who was happy, full of life, always wanting to help out and do what she could see others doing. She just loved people, would go with the flow and wanting to comfort anyone who was upset. She has always been determined, giving everything a try, and that has not changed, such a little battler!

In June 2015, just before Matilda's 4th birthday, she was diagnosed with Batten Disease, (CLN2 - Late-infantile) we were given the devastating news that it was a rare genetic neuro-degenerative disorder in which she would suffer from increasing seizures, losing her abilities to walk, talk, eat, see etc and with a life expectancy of between 6-12 years old. There is currently no cure and any treatments are only in the clinical trial stages.

Life for our family has not been the same since. We've had to close the business and both become full time carers.

We would appreciate any financial support to give Matilda the best quality of life possible. To have all the equipment needed to give her daily care, make her comfortable and to get her out of the house. To give her experiences and find things for her enjoyment and to make her smile. All donations will be used soley for this purpose.

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