On June 19th 2010, myself and my partner Darren (now my husband), organised a buggy walk in memory of our son Feddie. Freddie would have been a year old on June 21st 2010. We felt it important to organise this event to raise money and awareness of ichthyosis.

In 2005, me and my partner watched a documentary on Channel 4 about a condition called Harlequin, we watched in deep shock at this condition and admired the bravery of the families featured. We never thought at the time that a similar condition would affect our family.

In 2007, we had our first child our beautiful daughter Bella, we took to parenting like a duck to water and enjoyed every minute, we decided when Bella was one to try for a second child; I fell pregnant within a month. This pregnancy was very different to my first. I was constantly sick and always had abdominal pain, I always had a feeling this child would be born early as I felt like the baby had little room to move.

At 36 weeks I went into labour and gave birth to my beautiful son Freddie. I thought he looked a bit different, but put this down to being premature. 5 minutes later our world turned upside down when a rush of doctors came and said Freddie had very dry skin and needed to go to SCBU, they suspected he had something called ichthyosis. In my naivety I felt they were making a fuss out of nothing, how could dry skin warrant a stay in SCBU?

We were told he had collodion skin and that this would turn in to CIE, but two days later he was sent home with one pot of 50/50 cream and that was it!  Every day we saw Freddie decline, we took Freddie to the doctors 13 times in 10 weeks, saw a paediatric doctor and dermatologist twice, but they never helped Freddie, even though me and my partner were begging for help, because at 10 weeks old Freddie only weighed 4lb 6oz and never opened his eyes, but my doctor told me not to cry wolf!

At 10 weeks we were at our wits end and decided to take Freddie to hospital and not leave until they helped him. 10 days later Freddie passed away in our arms in hospital, the help came too late. Freddie had lost his sight, had a severe infection and it had gone unnoticed he had only one kidney.

My son suffered very badly and to this day I feel if he had been seen by a professional when he was born he may still be here now. Due to the circumstances in which my son died it is of up most importance that this condition is made aware of to the public and the medical profession.

Our buggy walk raised over £8,000 for the Ichthyosis Support Group and at least 150 people attended, I hope we did our son proud that day. My son achieved more in the 12 weeks of his life than some people do in a life time and I am so very proud that Freddie was my son.