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Rory's Story

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Most people who knew Rory were aware that he spent a lot of his life in Alder hey and that he had 3 holes in his heart. Not many realised that this was just one of several 'problems'. He actually had a very rare disorder called 'VACTERL association' This meant that he had 'Vertebral anomalies, Anal atresia, Cardiac defects, Tracheoesophageal fistula and/or Esophageal atresia, Renal & Radial anomalies and Limb defects'
Rory has had 3 operations and had more scheduled. The main one being his open heart surgery to repair his VSD's and 2 ASD's. Having overcome almost a month in intensive care, weeks on the cardiac ward and regular visits/stays to Alder hey he became a very popular, happy and inspiring little boy. In just a short few months he had gone through so much as had his devoted mummy who never left his side. Dannielle wasn't just his mum she was his dad, his nurse, his whole entire world.
It is with a heavy heart, tears down my cheeks and a pain in my chest that will never leave me that I am typing to tell you that this gorgeous little boy passed away on Wednesday 23rd March. Having taken him to a&e to find out he had something called 'corona virus' he was transferred to intensive care and ventilated. Even on Tuesday night as they ran him to intensive care I thought he would be okay, he had fought his way through everything else thrown at him. Our baby boy obviously got too tired of fighting and was too precious for this cruel world we live in.
If the love Dannielle alone had for Rory could have kept him alive he would be here now making us all smile like he always did.
This page was initially set up to help Dannielle financially after the loss of Rory. After the amazing support we received and an overwhelming response of people wanting to help we decided that we would like to set up a charity in Rorys memory. So... This page is now going to be used for donations towards the charity until we are officially registered and can transfer it over to a just giving page. 
We have had people raise money in Rorys memory so far by completing marathons, starlight walks, cake sales and dance shows. 
All money raised will go towards working with alder hey to help families in a similair position to the one we were once in. We would like to offer support especially for those families that struggle with childcare for their other children. More of this will be discussed in the coming months.  If anyone would like to donate to alder hey directly in Rory's memory that is fine but just so you know the money we raise as a charity will be used to help fund our own work with the hospital as a separate charity.  
Thankyou all so so much for helping to keep Rorys memory alive
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Donations 

  • Lucy Sewell
    • £10 
    • 8 yrs
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Sophie Townsend
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