Thank you for visiting this fundraising page in memory of our wonderful daughter Olivia Grace.

Olivia was born on the 17th April 2010 weighing a healthy 7lb 10oz.   She entered the world and immediatly made her imprint on both our family and friends as a happy little girl with nothing but smiles and we couldn't have been happier.

At 5 months old Olivia was meeting all of her developmental milestones however she had started to show signs of head lag which is weakness in head and neck control.  It was only upon visiting the family GP with minor concerns that he recommended a referral to the Community Paediatrician.  Appointments followed and the input of physio was put in place for Olivia to help build on her muscles to combat the head lag.  The community Paediatrician recommended a referral to Neurology at Alder Hey for further investigation.  At this point, we werent overly worried about Olivia, in our minds we had physio for her and things were bound to get better now, after all she was perfect. 

Over the following months we had appointments with Neurology, Opthalmology and MRI brain scan at Alder Hey hospital.  Throughout this Olivia kept smiling which in turn kept us smiling, in our eyes she just needed a little extra help with muscle tone and the doctors would soon confirm that a course of physio is all she needed to help her on her way.

Wednesday 7th September 2011, a day we will never forget.  We were meeting with Olivia's neurology Consultant for the results of her MRI scan.  This day to us, was infact, one of the worst days a parent can ever face.  We were given the news that Olivia had a rare genetic disorder called Infantile Sandhoff disease. I had never heard of Sandhoff as many haven't, and I remember looking at the Consultant as he spoke about the condition with disbelief.  There is currently no cure for Sandhoff disease the only aim for Olivia was to keep her as comfortable as possible. As Olivia's condition deteriorated she could no longer safely eat or drink and underwent surgery to have a gastrostomy feeding tube fitted straight to her stomach so that we could continue to ensure she recived enough nutrition.  She also became reliant on regular oxygen, all of which soon became our 'normal' for her. 

Over the following 12 months we did so many things with Olivia to create lasting memories to cherish forever. The highlight for us was her 2nd birthday where all of her family and friends came together to celebrate her life and the show how much love there was for such a little girl. 

On the 29th November 2012, Olivia passed away in her sleep.  Aged 2 years and 7 months she lost her brave battle against Sandhoff and all of its cruel symptoms that slowly deprived her of any quality of life.  To say that she was inspirational is an understament.  She showed us how much strength she had as a little girl to combat all that was thrown at her in an undeserved way.  We treasured every moment we had with Olivia, she opened our eyes to the important things in life and can truly say that as a family we are different people for knowing her.  It was a blessing having her in our lives if only for a short time. 

Claire House is the local hospice for children like Olivia with life-limiting illnesses.  It is our aim over the next 12 months to raise £6500 for Claire house which will cover the running costs for ONE day, that day being Olivia's 5th birthday 17th April 2015.  We as a family spent time at Claire House during Olivia's short life and the work they do is nothing short of amazing.  Please feel free to visit the Claire House website www.claire-house.org.uk/pay-for-day/ for more details on what we aim to achieve. 

We will be orgainsing and taking part in various activities over the next 12 months to raise funds for Claire house in memory of Olivia.  We would be extremely grateful for any donations or sponsorship you could make, however small, to help us reach the target of £6500. 

Thank you for taking the time to read this and thank you for your support. xxx