The Magic of Matilda

Matilda was born in July 2009, a small birth weight baby but Mummy was only a little lady, life was fantastic, a little miracle had been born. Matilda learnt to sit, crawl and walk. Her speech was developing slowly, and with regular speech therapy Matilda showed good understanding, slowly beginning to communicate with everyone around her.

Matilda loved to play with her dolls, which she called her babies, pushing them around in the pram. She loved dancing with her Mummy and would play ball for hours with Sam the dog. Matilda is an adrenalin junkie and loved all the fast rides and roller coasters. She loves to watch Waybuloo, Fifi, Iggle Piggle, Upsy Daisy and adores Peppa Pig and Mr Tumble.

Two weeks after her 3rd birthday July 2012, Matilda had a seizure, the family were told it could just be a one off, tragically Matilda carried on having seizures on a regular basis and after an MRI scan and EEG tests the family were told she had epilepsy.

In September 2013, all dressed in her uniform Matilda started Astley Park Special School aged 4 years old. On her fourth day Matilda suffered a seizure and ended up back in hospital where she has now been for the past 10 weeks. During these past few weeks Matilda has started to deteriorate whilst on the ward and after numerous tests the family received the devastating news that Matilda was diagnosed with CLN2 Batten disease, sometimes called Late infantile batten disease.

Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 3 and 5 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behaviour changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind and bedridden.

The family are currently investigating a clinical trial that is taking place over the next few weeks in London. This study is the first of its kind for sufferers of this condition and will be the first time that the investigational drug will be given to humans...we will keep you updated of her story and the fundraising events that will be taking place shortly.

Our wish is that Matilda continues to sparkle and we are able to raise funds in order to create a sensory room within her home, giving her the best quality of life we possibly can. With your help and support the families wishes will come true and we will make a difference to an amazing little girl.

You can donate online by visiting www.justgiving.com/The-magic-of-Matilda

Help spread awareness of Matilda's condition and follow updates on her Facebook page at www.facebook.com/MagicOfMatilda