It is now over 4 years since Max’s heart transplant on 2 August 2017.
Max’s heart was attacked by a virus and after one month at Manchester Royal Children’s Hospital, Max was transferred to the Freeman Hospital for a heart transplant assessment. Little did I realise that Max would be a patient there for another eight months. I remember when we arrived that I had no idea where I would stay as we live in Cheshire, over 180 miles away. I assumed that I would need to find B & B accommodation and, as I tucked Max up into his bed in PICU, I asked the nurse if she knew anywhere that I could stay. She said ‘Oh don’t worry! Follow me….we have a room for you at Scott House!’
“I was so grateful and over the eight months, Scott House became our ‘Home from Home’.”
I walked with the nurse along the long corridor at the Freeman Hospital, that we would eventually refer to as ‘The Magnolia Mile’ over the coming months, due to the colour of the walls and the extreme length of the corridor! She led me out of the hospital and through the fresh air to a beautiful modern building. She showed me to a lovely room and handed me the key. I burst into tears, as I couldn’t believe that such beautiful and clean accommodation was provided, free of charge, by The Sick Children’s Trust. I managed to sleep soundly and in the morning was met by the then manager of Scott House, Andrew Leadbitter, who showed me round the communal facilities and made me feel welcomed and reassured.
I was so grateful and over the eight months, Scott House became our ‘Home from Home’. There is no doubt that we would have been financially crippled without The Sick Children’s Trust providing a comforting place to stay. We found the Scott House team to be understanding, friendly and supportive, without being over-intrusive, so we always felt safe and secure, even when Max would have downturns in his condition. When Max felt well enough, he would visit Scott House in his wheelchair and sit in the garden, ride on the rocking horse or even make pizza with the play specialists.
When Max’s ‘gift of life’ finally arrived, Scott House also provided us with a ‘transplant flat’ – a half-way house between hospital and going home, to help us adjust to independent life/medication/post-transplant needs, whilst still being only a few minutes’ walk away from the ward.
“We found the Scott House team to be understanding, friendly and supportive, without being over-intrusive, so we always felt safe and secure, even when Max would have downturns in his condition.”
It was The Sick Children’s Trust who also inspired a change in the organ donation law. Amy, from the PR team, and Andrew asked us whether we would be prepared to speak with The Mirror newspaper about our experience with Max and about our desire to change the organ donation law in England. (We had written a piece for The Sick Children’s Trust, in which we included the following: “We feel that an ‘opt-out’ organ donation system would work better, as it does in other countries. At the moment, England has an ‘opt-in’ system. This means that there is a big gap between the proportion of people who would willingly donate organs in the tragic event of their death, and the proportion of people who actually carry a donor card or who make their wishes known to family members”).
“There is no doubt that we would have been financially crippled without The Sick Children’s Trust providing a comforting place to stay.”
After discussing the idea of talking to The Mirror with Max and having his full blessing, Amy arranged for us to meet with Jeremy Armstrong, reporter at The Mirror in May, 2017. I never expected that first article and picture of Max to appear on the front page, but it did and from that point on, Max became the poster boy for the Mirror’s ‘Change The Law For Life’ campaign. After gaining all-party support, the ‘Organ Donation Deemed Consent Act’ came into being in May 2020. It is also known as ‘Max and Keira’s Law’, after Max and his heart donor, Keira, who died, aged nine, in a car crash.
The change in law is already reaping benefits, but really, it is The Sick Children’s Trust (Amy and Andrew) who got the ball rolling, as without that gentle encouragement to share Max’s story nationally, we may not have had the strength or inclination to get involved, whilst we were still waiting for a heart for Max.
“Whilst we are ‘complete’, donor families are one short – incomplete, bereft! And yet, they have breathed life into other families by giving their blessing to donate their loved one’s organs in their hour of sharpest grief!”
When the news was broken to us back in early 2017 that Max would need a heart transplant to survive, it felt like a terrifying worst-case scenario – almost like it was the beginning of the end! Actually, it was the beginning. A new beginning, a second chance, a fresh start.
Post-transplant life as we readjusted to our ‘new normal’ has not been without complications, frustration, worry and at times, exasperation, but how lucky and blessed we are to be able to call ourselves a family of four, rather than a family of three. And there you have it! Whilst we are ‘complete’, donor families are one short – incomplete, bereft! And yet, they have breathed life into other families by giving their blessing to donate their loved one’s organs in their hour of sharpest grief!
Max continues to love life, despite the added pressures of the pandemic and he knows full well to treasure the gift of life, each and every day. We never forget that as Max grows older year by year, Keira – his donor, stays forever nine. And yet, her heart lives on, powering him through life with every pulsing beat.
Emma Johnson, Max’s mum
Stayed at Scott House for eight months in 2017
