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.