PDATE 3/3/21 after realising we have hit target WE WANT TO SAY THANKYOU AS THE COOLING BLANKETS ARE NOW A GIVEN PURCHASE FOR THE BENEFIT OF MERSEYSIDE. The kindness of our friendss, family and strangers has meant ehave surpassed our target. Which has got us thinking about the future of our cause. We have decided we want to do more as a permanent cause, supporting families with the financial aspects of child bereavement where we can, we have made the huge but right decision to set up a charity for this sole purpose in rubems name. It is only fitting that we carry on his legacy going forward and help who we can , where we can. We have adjusted our target in order to be able to hit the hround running as soon as we receive charitable statis. We appreciate every single kindness and donation from all of you. UPDATE 3/3/21After over 2 weeks in Alder Hey admitted to ICU, we tragically unexpectedly lost our beautiful first born and only child Rubén Paul Mckeown on the 13/02/2021. Rubén was no ordinary little boy. He was a courageous, odds defying little warrior born with a rare disease called X linked myotubular myopathy, although this never slowed him down! He was always up for a challenge and often surprised us at every instance. Despite our boys diagnosis we never dreamt this tragic end to his life would be the outcome, as we always hoped to have a cure in time. Alder Hey were truly beautiful with us, whilst we endured the pain of our loss and gave us endless support at every angle throughout the tragic loss of Rubén. We sat and held him for as long as we could as he passed, and each day after while we tried to prepare for the unthinkable, planning his care onward from here and organisation of his final journey. However the time we were permitted to spend with our baby was limited in order to ensure the correct care of his body after his passing, although necesscary we felt it torture. As we longed to make the most of our last week with him, to hug and hold him endlessly free of tubes and hospital machinery, truth be told we didnt want to be at hospital at all despite how beautiful the bereavement centre was, we wanted to have ruben at home, where he would want to be (with us) and where we did not have to leave him on his own. We began to navigate the challenge of finding a funeral director, COVID was a huge factor to some funeral directors many would not allow us to bring him home or only permitting a day before. Until we were made aware Debbie Bennetts Independent funeral directors, Debbie was the opposite to other directors we were aware of and fully supported our desire to bring our little boy home. The only thing standing in our way was the cooling blanket, a necesscity to maintain ruben at home and ensure his little body stayed as perfect as it was in life.

Now, we know these blankets are of limited availability within the community. Luckily we were loaned one by the kindness of Alder Hey To enable us to be at home with Ruben. These particular blankets are not necesscarily funded and in large supply by the NHS, we do know some Hospices have them. However there is no guarantee that some of these amazing machines will be available for all bereaved families in their time of need, as their simply isnt enough around - availability is very dependent on how many are in use at any given time and the owner/leasing parties willingness to lend them out to families and funeral directors.

We ask that if you could spare anything no matter how small, you donate what you can to enable us to purchase these blankets and give bereaved families what they deserve. Time at home, and an oppurtunity to say goodbye in the comfort of their own home. We have raised part ourselves from personal funds, alongside the kind donations of friends and family in order to purchase a Cuddle cot (neonatal blanket) to the cost of approx £1600. However we ideally would love to be able to raise enough funds to purchase the childs cool blanket approx £5000. The blankets will then be gifted out to the community of Merseyside in Rubens name in order for open use for all those in need. Families wanting to bring their children home/Hospitals/Hospices.

Our beautiful Ruben came home with the cooling blanket in situ, on the 16/02/2021 staying with us, in our family home until his final journey to the stars on the 20/02/2021. These 4 days at home in his blanket enabled us to grieve for him, hold him, kiss him, study his beautiful little face and allow our family to shower him with love all whilst ensuring his body was preserved to ensure his perfect little self remained the same. The peace it brought to myself as his mummy & his amazing daddy cannot be put into words and the thought another family may not be as lucky as we were in rubens final days with us, does not bare thinking about. We want to try and ensure that other families who suffer the devastating loss of their precious children have this indescribable oppurtunity should they wish to In the future.

The truth is we never truly know what is around the corner, and to be able to spend our final days with those we love how we/they wish it is the most beautiful gift we could ever have.

Thanks so very much for your time, every penny is truly appreciated.

Sian, Adam & Our angel in the stars, Ruben x