Thea-Mae and her family love coming to Little Harbour, whatever the time of year. There is always something fun for her and her siblings to get involved in, and it gives Ali, her mum, time to relax and unwind. But Christmas is an extra special time for the family at the hospice, filled with comfort and joy.
Thea-Mae is your typical lively, vibrant 5 year-old. She is a little whirlwind who lights up every room, but the little girl has already had to face a number of complications in her short life.
Ali, Thea-Mae’s mother, experienced a difficult pregnancy. Nothing of major concern seemed to be going on, and Ali blamed the complications on her age and working early hours.
The birth proved a traumatic experience for both Ali and Thea-Mae. Ali stopped breathing 4 times during labour, and Thea-Mae got stuck in the birth canal for 5 minutes, resulting in her being starved of oxygen, and needing assistance breathing.
Before even making it to the end of the hospital corridor to be checked over, the little girl had stopped breathing completely.
It was discovered that Thea-Mae had a fractured left clavicle, and doctors assumed that the irregularity in her breathing was due to pain. Ali and her husband Luke were then finally allowed to return home to start their life with their baby.
Thea-Mae soon proved to not be an easy baby.
Ali said: “Nobody could hold her, nobody could touch her, I was the only one that could do that. We just assumed she was in pain from her shoulder.”
Thea-Mae kept holding her breath, went blue, and refused to take her bottle. After having four children, Ali knew deep down this was not normal.
“I had to try and capture on a video when she wasn’t breathing to show the health visitors who came over, to get someone to notice”, said Ali.
“I was told to just cuddle her and nobody seemed overly worried, but I was adamant my daughter wasn’t breathing properly.”
The family had a visit to A&E, where a high dependency nurse noticed that things were not right with Thea-Mae. They suspected she had Bronchiolitis, and her body began to shut down, resulting in the little girl having to be tube fed. After this traumatic visit, the family had a week of normality before a tumultuous few months.
Thea-Mae spent 7 months in Derriford hospital, then 4 months in Bristol. She underwent intensive tests to find the cause of her discomfort and pain.
She was diagnosed with severe GORD, and Thea-Mae now has to be PEG-fed. Ali also noticed her daughter was very excitable, and would run around and fall over. She’d also have manic episodes of pinching, biting and spasming.
“I was so grateful for the day Thea had one of her manic episodes in front of a consultant”, Ali said.
Thea-Mae was then diagnosed with alternating hemiplegia of childhood, which results in hemiplegic migraines, dystonia, akathisia and hydrocephalus. Quite quickly, all the symptoms began displaying. Thea-Mae’s condition is one in a million, with only 50 cases in the UK, and 500 in the world.
Thea Mae also experiences dementia like symptoms, resulting in her not being able to recognise her own mother.
Ali said: “She was screaming for me once, but she didn’t even realise it was me who was holding her. She wanted me, but didn’t know where I was.
She does a lot of weird and wonderful things, bless her, and no two days are the same. She is quite often in pain, that is all she’s ever known. I have to carry her in a zip up jacket, she won’t be put down or held by anyone else. She’s always had pain. I feel for her, I really do.
Thea-Mae’s medical needs affect all her family members. All her siblings have been trained to look after her, and how to put on her oxygen mask. Her elder siblings, Katie and Christoper are very aware that one day she could not breathe.
“It really affects them”, Ali said. “It is especially hard for Felicity, my 6 year old, as all my attention is often on Thea.”
The family, who live in Plymouth, make regular visits to Children Hospice South West’s (CHSW) Little Harbour hospice in St Austell. They have resilience stays at the hospice, and the care team stay in touch via phone calls and door stop visits.
“That is one of the main things my kids love, the door stop visits. They always look forward to cake being delivered!”, Ali said.
“Whenever I tell them we’re coming to the hospice, I tell them we’re going on holiday to Little Harbour, and they absolutely love it.”
Ali expressed her gratitude for the team at Little Harbour. She is so grateful that she is able to contact her community nurse, who will then contact the hospice, and within a week Little Harbour will be on the phone to her.
“Thea 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?”
Little Harbour provides a space for Ali to spend time with her other children, as most of her time can be taken up by Thea’s complex needs. She visited Little Harbour with Thea-Mae and her sister Felicity. Thea-Mae was occupied with her friends and the nurses at the hospice, so Ali and Felicity were able to go to the cinema together.
“It makes such a difference, especially when the sibling team can give my other children lots of attention”, said Ali.
Christmas at Little Harbour is a special time for Thea-Mae and her family, as the hospice provides a safe space full of comfort and joy.
The hospice holds their own Christmas Day experiences, where the family can enjoy festivities like opening presents together by the Christmas Tree, and having a Christmas Dinner with all the trimmings.
“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”, said Ali.
Please help to give comfort and joy this Christmas to families like Thea Mae’s
“It has really helped make Christmas again. At home, we try to make it normal, but we can’t guarantee what state Thea will be in. It is magical to have a day where we are spoilt, and we can spend quality time together as a family.”