Our beautiful baby daughter, Amber was born on 1st August 2009 and was perfect in every way.

It was in October that we found out during her routine 8 week check with her GP that she had a significant Heart Murmour.  Shortly after receiving this news, we noticed a dip in her chest which resulted in her being taken to the Evelina Children's Hospital in London.  It was here that she had her first Eco Cardiagram and the results of this showed that some of her hearts valves had prolapsed and were leaking.  She was started on medication and we were given the devastating news that it was thought she had Neo-Natal Marfan Syndrome which affects the connective tissue in the body.  We were told that it was unlikely that she would live a long life and that her condition was completely incurable.

We were shocked and numb but Ambers beautiful nature and courage helped us to carry on the best we could.  Following numerous spells in hospital, and a week in the Intensive Care Unit at the Evelina, we were given the news that Ambers lungs were also collapsing and that she didn't have long to live, we had to make the decision whether to take her home or to our local hospital.  We were also asked whether we had considered a Hospice for her final days.  We immediately looked at the Demelza (Sittingbourne) website and wanted her to be moved straight away.  Two lovely ladies from Demelza came to visit us in the hospital and gave us all of the answers that we had regarding Ambers care and she was transferred there on Tuesday 16th February 2010.

Demelza house was everything that we could have wished for, they looked after Amber and our family and friends beautifully and gave us all such special time with Amber in her final days.  We can never repay them for what they did for Amber and our family and we hope that by doing this fundraising it will enable them to continue to be able to help other families who need to use their wonderful services.

So on 1st August 2010 me and a group of friends are cycling from Demelza House (Sittingbourne) to the Railway Pub in Walmer, Deal and I understand that the route we are taking is just over 40 miles.   

As this would have been Amber's 1st birthday, we are ending at the Railway Pub in Deal where we will be continuing our fundraising efforts with a BBQ and numerous other activities all in aid of Demelza House.  If you are free, please come along and support this wonderful cause.

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