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laura linford

In memory of Jack Riley Linford

fundraising for research and awareness for Metabolic Support UK because this killer condition is too rare!

82 %
£1,242.23
raised of £1,500 target
by 109 supporters
Donate

Metabolic Support UK

We provide bespoke information and support to improve lives of those affected by IMDs

Charity Registration No. 1089588

Story

Jack was born at 9.29am on Wednesday 1st August 2012. A very content little baby until he found his feet and his voice, he then turned into the typical mischievous little boy. Had to touch everything and run everywhere, walking just wasn’t an option.

His older brother Alex (5years), was his best friend…and worst enemy, as brothers tend to be like. There wasn’t a day where they didn’t laugh, play, fight and cry...and usually in that order but nevertheless they loved each other unconditionally.

Not to forget mentioning George (curious George) Jacks favourite teddy who he didn’t go anywhere without! George was like our 3rd child. He had to wear his coat and shoes whenever we were going out, Jack pretended to feed him at dinner time and tucked him up with him at bedtime. He loved him so much we had a replacement George for when one needed a wash, he didn’t know this.

Jacks favourite phrase is ‘I don’t like that’ and it used for near enough everything! Even things he did like when he was in one of those moods.  He certainly didn’t like anyone touching his hair. The messy out of bed look was exactly that, I couldn’t even brush it or he would throw a paddy and say ‘I don’t like brush my hair mummy no!’

Jack sadly lost his life at 2 years old due to a condition called VLCAD (Very long-chain acyl-CoA dehydrogenase deficiency). He had a sickness bug which he just never recovered from. Due to the VLCAD he had swelling on the brain so from the nature of his death we chose to donate his kidneys and save another life.

We are now fundraising in every way possible in Jacks memory to raise awareness of this disease which is vital to newborns if not detected. We have started a petition to get VLCAD onto the newborn screening and using social media sites to share our story.



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