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our champions beni

Our Brave Hero Beni - Another Angel in Heaven

Fundraising in Beni's Memory

Beni was born with an unknown neurological disorder and in December 2012, at the age of 18 months he died unexpectedly.

On the day Beni was born, he died twice. His disorder meant he was unable to use his muscles. When he was born Beni couldn’t even breathe for himself (Beni had to be resuscitated twice) nor move his head or limbs. For months he was unable to make any sound – even Beni's cries were silent. He was originally diagnosed with an extremely rare condition called Tyrosine Hydroxylase Deficiency (THD). But, despite showing all the symptoms and the prescribed treatment helping him, the genetics test for THD came back negative. Further genetic tests are outstanding, but for now, what his neurological disorder was, remains unknown.


The medication made it possible for Beni to gain greater control of his muscles, but the disorder left him very weak. Holding his head up was hard work, and he had only just learnt to sit upright on his own. But even at 18 months he was a long way from learning to crawl. Beni's voice and swallow reflex were extremely weak - as are the other muscles that you use to eat. As a result he was fed through a tube that went down his nose into his tummy. He required regular suctioning throughout the day to remove saliva and mucus (that you would swallow without even thinking about it) that threatened to block his airway.

Throughout his life, the biggest threat to Beni's life was his low immune system, compounded by his inability to swallow. In August  2012 he was rushed to intensive care in the hospital, but not before Rachel and Beni's carer had to first save his life. That was Pneumonia, the fourth time he had caught it in his short life.


In December 2012, Beni was taken to The Royal Hampshire Hospital in Winchester with a chest infection. He was quickly prescribed antibiotics and a week later we were preparing to bring him home. But on that same day, without warning, his airway became blocked. A secretion blockage in his airway caused a loss of oxygen to his body, which caused his heart to fail. The doctors cleared his airway quickly, but Beni's heart never recovered.The support the Trust offers is immense. The need for complete family support is so very often over-looked. Sebastian's Action Trust understand that caring for seriously-ill children impacts everyone in a family, from the child him- or herself, to the parents as carers, to sibilings. While this support is vital, demand far out-weighs supply. Therefore, we've chosen to return the help, which the Trust still provides to us, by raising funds in Beni's memory.


Previous event: 

14 Apr 2014 - Stuart's London Marathon, £1,500 

20 Jul 2013 - Dave Ireland' Dun Run Team (Dunwich Dynamo), £673.05

09 Jun 2013 - Rachel, Lucy, Tasha and Angela's run for Beni
(Kingston Lacey Half Marathon) £1,551.45

24 Mar 2013 - Eastleigh 10km, £ (inc. above)



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