A Generous Visit from Ben Jordan of the Noah Jordan Foundation 

At Alexander Devine Children’s Hospice Service, we recently had the honour of welcoming Ben Jordan, founder of The Noah Jordan Foundation, who visited to present us with a generous donation of £5,000. This generous gift is a tribute to Noah, Ben’s son, who spent his final week of life in our care in March 2024. It was a moving visit, and we are immensely grateful for Ben’s continued support. 

The Noah Jordan Foundation was established in Noah’s memory and is dedicated to raising awareness of Alpers Huttenlocher Syndrome, the rare mitochondrial condition that Noah had. In addition to supporting charities that helped Noah and his family, such as ourselves, Ronald McDonald House, and Birmingham Children’s Hospital Charity. 

The foundation has set an ambitious target of raising £100,000 to fund a three-year research fellowship (PhD) into Alpers Huttenlocher Syndrome. This crucial research will be led by Dr Laura Smith, who is a Neuroscientist working in the Mitochondrial Research Group at Newcastle University. Through her research, Dr Smith hopes to better understand Alpers’ syndrome and discover new ways to treat this paediatric mitochondrial disease. 

Ben’s passion for making a difference was evident throughout his visit. He expressed his heartfelt wish that this donation be used to support bereaved families within our hospice network. Losing a child is an unimaginable experience, and the journey of grief can be overwhelming. With Ben’s donation, we will be able to further develop our bereavement services, ensuring that families have access to the emotional and practical support they need during such a difficult time. 

At Alexander Devine, we understand the importance of providing compassionate care not only to children with life-limiting and life-threatening conditions but also to their families. Our bereavement support includes counselling, remembrance events, and ongoing communication to ensure families feel connected and supported. Ben’s contribution will allow us to continue and enhance these vital services, honouring Noah’s memory in a way that truly embodies his legacy of love and strength. 

The work of the Noah Jordan Foundation is remarkable. In addition to raising funds for research, they are dedicated to increasing awareness of Alpers Huttenlocher Syndrome and mitochondrial conditions more broadly. Through their efforts, they hope to improve understanding, early diagnosis, and treatment options for families affected by these rare conditions. 

We encourage everyone to learn more about the Noah Jordan Foundation and support their inspiring mission. By following their journey on social media, you can help spread awareness and contribute to the incredible work they are doing in Noah’s name: 

Facebook: Noah Jordan Foundation 

Instagram: @noahsfoundation 

At Alexander Devine, we are deeply honoured to be part of Noah’s legacy and to work alongside inspiring individuals like Ben Jordan. Together, we can ensure that families facing unimaginable challenges receive the care and support, needed. 

Thank you to Ben and the Noah Jordan Foundation, for your generosity and dedication. Noah’s light continues to shine brightly, touching the lives of so many.