In September I will be running the Great North run to help raise money for a charity that has helped my Grandson William & his family in so many ways.

William was born with a rare Chromosome abnormaility that effects all areas of Williams development as well as effecting his Kidneys, this chromosome deletion can cause several other problems that become apparent later in life.

William is 3, non verbal and developmentally a 6 month old baby & only last year was diagnosed with Autism Spectrum Disorder.

Remembering Rebecca is an amazing charity that helps so many children every year with different needs, buying specialist equiptment, organising days/trips out & funding caravan breaks away for those special families. only last year they made it possible for my grandson & his family to go away for well deserved break, something that would not have been possible if it wasn’t for this amazing charity.

They have recently helped with funding for a specialist Pushchair for William which has made every day life so much easier not only for William but for his family too.

About Rebecca & The Charity

Rebecca was born on the 28th October 2008 and was what we thought a healthy baby girl. The first few weeks were normal apart from Rebecca was a slow at feeding and she didn’t seem to gain weight. However the health visitor and the doctors didn’t seem bothered so we just took their word for it and continued trying to get her to take as much milk as possible.

The beginning of January came and Rebecca seemed to get a cold and she didn’t seem to get any better, this resulted in her being admitted to James Cook University hospital for what the doctors thought was bronchiolitis. Rebecca was very poorly and was put in an oxygen tank to help her with her breathing. It soon became obvious to the paediatricians that there was something wrong with Rebecca other than the suspected diagnosis and the carried out many tests during our 3 week stay.

Rebecca was sent home 3 weeks later and a brain scan was booked for the middle of February. At this time Michael took redundancy as we had a feeling that there was something wrong with Rebecca by this time as she wasn’t smiling like a 4 month old baby and she still didn’t cry.

On the 26th February our world fell apart when we were told that Rebecca had a condition called lissencephaly- smooth brain and that Rebecca was going to be very different to the little girl that I thought I had brought home from hospital 4 months earlier. Rebecca would not walk, talk or develop beyond a 3 month old baby and her life expectancy was 2 years. This news broke our hearts but we had no choice but to be strong for out other daughter Charlotte who was 5 at the time.

Our lives changed forever and for a few months we had constant appointments at the hospital seeing different consultants. Rebecca had lots of support from professionals including speech and language, physio, portage, dietician all played a huge role in ensuring Rebecca stayed healthy, gained weight and developed.

Rebecca was fitted with an ng tube in January when she was in hospital to help her gain weight and on the 29th June 2009 she was fitted with a gastrosomy which fed her in her tummy

Rebecca was a lovely little girl and those that worked closely with her became very attached to her. She slept a lot but we think that was down to the medicines that she was on to try and limit the number of seizures that she was having .It became a joke with her portage worker that Rebecca would have her play time asleep. She was very placid and never moaned or cried out loud- in fact we only ever heard her cry 3 times.

We were told that Rebecca would have a short life but we didn’t expect what happened on the 6th August 2010 to happen- Rebecca was 21 months old she only has 3 months to go to get to her 2nd birthday which was a milestone that we really wanted her to get to. Everyone thought that Rebecca would die due to a chest infection however she had died during her sleep, we are assured without pain or distress.

Life is very different without our little girl who is an angel in heaven who we strongly believe will be running around and having fun. We love and miss her terribly but we try and continue with our life and try and remain positive as we believe that Rebecca was not sent to us to make us unhappy but was sent to change our outlook on life- which she certainly has xxxx