‘Thea has fought the odds from when she was born’: Parents launch fundraiser for little girl with rare brain condition

The first two years of Thea Hay’s life have been incredibly challenging.

The little girl from Selkirk in the Scottish Borders has a rare condition called hypoxic ischemic encephalopathy.

Her daily life is impacted in multiple ways, and she has to take regular medication to treat reflux, epilepsy and muscle pain, alongside undergoing physiotherapy, occupational therapy and speech therapy.

Now her parents are fundraising with the dream of taking their daughter to the United States to receive specialist treatment.

Thea has suffered from the condition since she was born, after a lack of oxygen and blood flow to the brain due to birth complications resulted in severe brain damage.

Thea’s parents, Kasey Watson and Jack Hay, both 23, said they were told “it was unlikely Thea would survive and to make funeral arrangements”, but that their daughter “proved everyone wrong and has continued to fight the odds ever since”.

The two-year-old – who underwent multiple tests to diagnose her condition – can currently sit, interact, play, make noises and say a few words, but she can’t crawl, walk or feed herself.

But it’s been a tough journey for the family over the past two years, with Thea suffering with epilepsy, spasms and spasticity in her muscles as a result of the condition.

Ms Watson also says that Thea has a high chance of being diagnosed with cerebral palsy in the future: “It is likely Thea will be diagnosed as she suffers from hypertonia and spasticity in her muscles, which means the signals from her brain to her muscles don’t communicate how they should.”

Fundraising for treatment in the US

Thea’s parents have now decided that she would benefit from treatment from the NAPA centre in Los Angeles, and have launched a fundraiser to raise money to enable their trip.

NAPA offers a range of diverse and innovative therapies to help children “reach their full potential”, and when treating children with cerebral palsy and other neurological disorders the centre also uses the Intensive Model of Therapy (IMOT).

Thea has been accepted by the centre to attend for treatment from 7- 25 June, where her mum says she will “undergo numerous therapies like speech, physiotherapy, occupational and other specialist treatments.”

The centre will also assess Thea “and decide which intensive program would be best for her”.

Although Ms Watson says the NHS has been “amazing” with Thea, they have decided to go to NAPA as the wide range of intensive therapy is not something which the NHS can currently offer their daughter.

“Children often advance to the next developmental skill or higher during their intensives,” adds Ms Watson, with many children doing what they would usually learn in 12 months in a period of just three weeks.

‘Thea has continued to fight the odds from when she was born’

Thea’s parents said that although it has “been a hard decision to fundraise” they feel that their daughter would “hugely benefit” from the NAPA programme.

So far, they have raised nearly £12,0000 of the £25,000 target and “are so thankful to everyone” who has donated so far.

Thea’s parents said that they will continue to fundraise even after Thea has attended NAPA so that their daughter can continue to take part in intensive therapies, and “hope everyone will continue to support us”.

Ms Watson said they frequently research with the aim of finding therapies and treatments such as those offered in NAPA in order to allow Thea to “reach her best potential”.

She said that herself and Jack are both very hopeful as Thea “is a very determined little girl” who has “continued to fight the odds from when she was born”.

Ms Watson says her daughter is “the best little girl who is so happy and cheeky, she really has the best personality and keeps us in check”.

“We are so hopeful for our Napa intensive and we hope that everyone will support us and follow our journey on Facebook and Instagram,” adds Ms Watson.

To find out more about Thea’s journey or to donate to the family’s fundraiser, visit the Thea the Smiling Warrior Just Giving page.

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