I am taking part in Nuclear races with the aim of raising awareness of Metabolic Diseases in children.

I am doing this in aid of my beautiful best-friends little baby boy Freddi, who passed away on 24/08/2014 just 5 days old due to a metabolic disease. My friend had a very difficult pregnancy and was constantly being dragged in and out of hospital and having false labours, which were causing her great difficulties with day-to-day life as she also has another little boy; Ronni aged 2.

Danielle was taken into hospital just under 2 weeks early for an emergency caesarean as Freddi was not taking in fluid. After the caesarean everything seemed to be fine with Freddi and he seemed healthy. However, 8 minutes after he was born he began to have difficulties breathing on his own. He was then put onto allsorts of monitors and machines to keep him going  and after the first day or so things seem to be looking better. Sadly his condition dramatically changed and Danielle and Kerons lives were turned upside down.

King's Lynn hospital had to then transfer Freddi to Norwich University hospital which had a special unit which could care for Freddi better. After some tests we were told Freddi's condition was severely life threatening and a Brain scan was required. After this scan it was concluded that Freddi had a severe metabolic disease and nothing could not be done. Seeing the pain Danielle and Keron went through as they made the decision to take Freddi off his machine and let him "get his wings" was the hardest decision any parent could of made.

I absolutely admire the pair of them as I've never seen two people be stronger and be there for eachother as best as possible in a situation like this.

Tragically, just a couple of months after Freddi's death Danielle was taken ill in hospital. She went through a horrific ordeal and suffered multiple seizures, and as a result now has difficulty with her speech and mobility.

Both Danielle and her little boy Ronni are suffer from Metabolic Diseases.

Metabolic diseases are not very well known and not having many answers in a situation like this can be the most difficult thing as you are left with so many unanswered questions. 
I want to raise as much money as I can to help further research to be carried out in to these tragic diseases.

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