The memory of a much-loved Birmingham boy whose brave battle with a rare genetic condition captured the hearts of the community, will live on in a special festive celebration next month.
Alexis Constantinou was born with Spinal Muscular Atrophy (SMA), an extremely rare condition that causes muscle weakness and progressive loss of movement.
His family were supported by Acorns Children’s Hospice throughout his life and spent time at the charity’s hospice in Selly Oak. Alexis sadly passed away at the hospice in 2015, aged just seven months old.
Now, the family will be joining hundreds of people in a special charity campaign throughout December called Celebrate Your Star. The initiative will see people make a dedication to a loved one and for each dedication, a physical star will be hung on a Christmas tree at one of Acorns three hospices.
Those honouring loved ones will also be invited to join festive Celebrate Your Star events being held across the region, to pay tribute to each individual star.
Mum of Alexis, Xanthe Constantinou, from Edgbaston, encouraged others to join the initiative, proceeds from which will go to Acorns and the charity’s vital work with families like hers across Birmingham.
She said: “Acorns did so much for our family, at such a difficult time in our lives. They have given us memories with Alexis that will live on with us forever.
“Celebrate Your Star is part of our way of remembering Alexis. He was such a happy boy with an amazing smile. I hope by sharing our story, others will be inspired to join us and pay tribute to special people in their lives, whilst at the same time supporting Acorns.”
Alexis’ story
When Alexis was born, his parents, Xanthe and George were overjoyed by their new arrival. However, they soon noticed the baby boy’s arms and legs didn’t move as much as they expected.
They were referred to Birmingham Children’s Hospital where tests confirmed the devastating news that Alexis had SMA, and was unlikely to reach his second birthday.
Xanthe added: “We went into shock. It’s so devastating, heartbreaking. You can’t put into words how horrendous it feels. We’d never heard of the condition. There’s been nothing like it in our family so we had no suspicions that this could happen.
Sadly, in August 2015, Alexis came down with a chest infection and his condition deteriorated. A hospital consultant recommended the family were referred to Acorns in Birmingham for end-of-life care.
The family stayed at the hospice where they were supported by the specially trained Care team and were able to make precious memories with Alexis away from hospital and in a homely and comforting setting.
Xanthe added: “The staff and volunteers offered to cook and do our laundry; there was a swimming pool, which we used with Alexis, and there were lots of activities, like clay making, to keep his big sisters busy.
“I can’t stress enough how amazing Acorns has been for the whole family, they are so supportive. I really can’t praise Acorns enough.”
Fundraising in memory
Since he passed away, Alexis’s family have dedicated their time to raise money for Acorns, to ensure the charity’s vital care and support is available to every family that needs it.
The family have taken part in fundraising events for Acorns, including the charity’s Lantern Walk, and a special online tribute fund currently stands at a phenomenal £18,450, an amount raised thanks to kind donations from friends and family.
Ben Gilchrist, Acorns In Memory Manager, said: “We are so grateful to Alexis’s family for sharing their story. It’s a powerful reminder of how important our work is with the local families who need us.
“I hope that people are inspired by the family to join Celebrate Your Star and remember a loved one. Whether it’s a friend or family member – it’s a fantastic way of paying tribute and remembering someone special, whilst at the same time supporting the work of Acorns.
“The money raised will help us continue providing our specialist palliative care and support to more than 700 children and their families every year – at Christmas and all year round.”
Celebrate Your Star with Acorns
For each Celebrate Your Star dedication made, a physical star will be hung on a Christmas tree at one of Acorns three hospices. A second star will be posted to the person paying tribute – to display at home in time for Christmas.
Those honouring loved ones will also invited to join special festive Celebrate Your Star events in Birmingham, Walsall and Worcester, where family and friends will come together to celebrate each star being remembered.
Find more information on how you can get involved with Celebrate Your Star and remember a loved one.
ENDS
For more information or for interview, photograph or filming opportunities, contact the PR and Communications team:
David Chamberlain: 01564 825020 / 07817 612422 / david.chamberlain@acorns.org.uk
Nicki Robinson: 01564 825062 / 07814 302153 / nicki.robinson@acorns.org.uk
Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.
- It costs £27,000 every day to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.
- To find out more about Acorns services, visit our Hospice Care pages
