10 December 2023 , 19:13
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A young girl who has a rare and life-limiting condition will enjoy a special Christmas thanks to the help of a charity.
Five-year-old Thea Mae is being supported by Children's Hospice South West (CHSW) through its Little Harbour hospice in St Austell, Cornwall. Her parents Ali and Luke Harris said the whole family is now looking forward to Christmas as it will be a special day, with activities, presents and a group dinner.
The little girl suffers from Alternating Hemiplegia of Childhood (AHC), a rare neurodevelopmental disorder - with only 50 cases in the UK and 500 in the whole world. It presents itself through a range of symptoms including painful muscle stiffness, cognitive impairment, migraines as well as heart, mobility and vision problems.
Thea Mae during music therapy with dad Luke and sister Felicity (Children’s Hospice South West)Thea Mae also suffers with dementia-like symptoms and has to be fed through a tube. Life at home is incredibly busy for Ali and Luke who also have four other children to look after - Christopher, 16, Katie-Jane, 14, Summer-Rose, 12 and Felicity, seven.
Since the child's diagnosis, the family has been supported by Little Harbour children's hospice, receiving visits and resilience stays. Mum Ali said: "Thea Mae goes through phases. She’ll be doing well, then the next she struggles. I tend to be at my wits end, and Little Harbour just seem to know. They’ll ring me and say, are you ready for a stay?"
Baby boy has spent his life in hospital as doctors are 'scared' to discharge him
Thea Mae's medical needs affect the whole family and all her siblings have been trained to look after her and know how to put on her oxygen mask. Her elder siblings, Katie and Christopher, are very aware that one day she could not breathe.
Thea Mae pictured with her mum Ali (Children’s Hospice South West)Ali said: "It really affects them. It is especially hard for Felicity, our seven-year-old, as all my attention is often on Thea Mae." During their stays at the hospice, Thea Mae is looked after by the trained nurses and Care Team, while her siblings also take part in activities and receive emotional support.
Talking about the family's Christmas plans with Little Harbour, Ali said: "The children love spending Christmas at Little Harbour. They have so much fun wrapping each other up as Christmas presents. Every room in the hospice has something fun going on, and they were delighted when they saw the tree with something for everyone underneath it."
Felicity adding decorations to the Christmas tree (Children’s Hospice South West)CHSW is supporting 49 families from Plymouth through its Little Harbour children's hospice which looks after a total of 133 children and young people and their families, as well as over 90 bereaved families. The charity has three hospices in the south west with Little Harbour being the local hospice for families from across Plymouth and Cornwall.
This Christmas CHSW is asking supporters to consider making a donation to help provide the gift of comfort and joy to families like Thea Mae's. To donate, visit www.chsw.org.uk/comfort-and-joy where you can also watch a video of Thea Mae's story.