Able to be a happy and healthy child

This Organ Donation Week, we’re very grateful to Hannah and her husband Mike for sharing  their  very moving story.  

When our first child, Kieran, was born in 2006 it was soon discovered that he had a rare metabolic urea cycle disorder referred to as CPS1.  Put simply, the higher the ammonia level, the more poison in his blood.  Unfortunately, after four tough years Kieran died, following a long stay at King’s College Hospital.  He had been too unwell for transplant. 

 Ollie was born in 2015, with a 1:4 chance he would also have the same genetic metabolic condition.  With this in mind, Ollie was born in intensive care at St Thomas’s Hospital.  After a couple of days, it was soon apparent that Ollie had the same diagnosis as his elder brother.   

 Ollie was listed for a liver transplant when he was three months old, and we had the call to say that a liver had become available when he was 11 months old. 

In a curious twist, the day we received Ollie’s call up would have been the day that we celebrated Kieran’s 10th birthday.  This was emotionally compounded by us heading to the place where ‘big bro’ had spent his last months.  Ollie responded to his transplant fantastically, though the irony of naming our child ‘O-Liver’ soon became apparent, with his O blood grouping.

 After another year, Ollie was completely tube free and able to be a happy and healthy child.   

 We are delighted to say that Ollie has continued to be amazing throughout his childhood thus far, with only a very occasional blip along the way.  He’s led a full life and over the years has taken profound interest in Thomas the Tank engine, Top Gear, and dinosaurs; while Pokémon and cricket are in current favour.  

 Just after Ollie’s second anniversary we sat down and wrote a letter to say ‘thank you’ to our donor family.  This is naturally a very emotive process, and we hoped to convey the life changing, and importantly, the life enhancing difference that this has made. 

We feel very lucky that Nicola and David responded to us and we remain in regular contact with them, meeting up whenever we are able. They have also been able to attend the Transplant Games for the last four years with us and have presented Ollie with his winning medals, which has been very special.