A fighter who continues to change lives

A fighter who continues to change lives

Guest Blogger: Luke Steel

Devon James Steel was born on 21 May 2015 in Birmingham. After he was born, we found out that Devon had a very serious heart condition. He was eventually diagnosed with Hypertrophic Cardiomyopathy, as well as, Aortic and Pulmonary Stenosis. We also found that all four of his heart valves had issues and were not formed correctly. We stayed at Birmingham Children’s Hospital for around three weeks when he was first born, and were lucky enough to get a room at the amazing Ronald McDonald House. This meant that we had a base right next to the hospital which was completely free for us, however it costs Ronald McDonald House Birmingham around £25 per night, per family, that stay there.

Devon was such a brave little boy. He was able to come home with us for eight wonderful weeks. He was readmitted to hospital when he was two and a half months old, we never got discharged again but managed again to get a room at the Ronald McDonald House.


He underwent open heart surgery and then ended up having two further emergency heart operations. He received the best care and the doctors and nurses were wonderful. Devon fought hard and we were able to have five beautiful months with him. On 30 October 2015 Devon passed away, peacefully in the loving arms of his parents at Acorn Children’s Hospice, Birmingham. We were so grateful for our time with him.

Devon was so, so strong and we believed he fought so hard to survive in order to bring family and friends closer together and helped to show us a completely different world, a world where every day is a true struggle for the children and families in the hospital. We want to continue Devon’s work and raise awareness of what some people go through and all the amazing work that was done for us by Birmingham Children’s Hospital, Ronald McDonald House Birmingham and Acorns Children’s Hospice.

We were so, so lucky to have amazing support from family and friends and we were so fortunate that we were able to spend time, for free, in Birmingham at Ronald McDonald House. We met other families who did not have such a support network, had other children, quit jobs to be with their critically ill children and even ended up homeless. We want to be able to support these people and help make a difference to their lives.

 

Upon Devon's birth we planned to return to his mother Jaclyn's hometown of Mount Horeb, Wisconsin, USA. Unfortunately this never came to be. Wanting to give something back to the charities that were so incredible to our family during the most difficult of times, we came up with an idea. We arranged to cycle the 3,888 miles Devon should have travelled to begin a new life in America. This was done in 161 hours to reflect Devon's 161 day battle. A team of 130 cyclists covered the miles in one hour slots, 18 hours day from 7pm on Saturday 14 May until 2pm on Saturday 21 May; what would have been Devon's first birthday. We've done an early estimate and it's looking like we've raised around £35,000, we are over the moon!

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