Yorkshire toddler diagnosed with rare syndrome after being born without her left ear

A young girl from Yorkshire has been diagnosed with a rare syndrome after being born without her left ear.

Gaja Stawska, 22-months-old, has Goldenhar syndrome - an extremely rare condition characterised by the abnormal development of the eye, ear and spine.

Due to Gaja's condition, the S-shaped curvature of her spine makes it challenging for her to maintain balance and walk.

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She has been having physiotherapy since six weeks old and is now able to walk.

Marita Stawska with daughter Gaja StawskaMarita Stawska with daughter Gaja Stawska
Marita Stawska with daughter Gaja Stawska

Her mum, Marita Stawska, 34, is hoping to raise £108,000 for a CT scan and ear reconstruction surgery in the US.

Gaja's aunt Sandra Kulesza, 36, a stock manager, from Wakefield, said: "She started having physiotherapy at six-weeks-old. Normally, the newborns can start such physiotherapy at eight-weeks-old, but she had to start it sooner because of her problem."

Gaja was born on July, 27 2023 in Elblag, Poland with her twin sister Zoja.

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Marita had a smooth pregnancy and only found out something wasn't right with Gaja when she was born.

Marita Stawska with twin daughters Gaja Stawska and  Zoja StawskaMarita Stawska with twin daughters Gaja Stawska and  Zoja Stawska
Marita Stawska with twin daughters Gaja Stawska and Zoja Stawska

Sandra said: "It was a shock for everyone "The doctors said 'it's a girl it's fine - she will have long hair - she'll just cover it'."

But Marita also noticed her s-shaped spine and pushed for genetic testing. She was diagnosed with Goldenhar syndrome in September 2024 when Gaja was one.

Gaja has been undergoing physiotherapy once a week since she was six-weeks-old for her s-shaped spine - which has meant she is able to walk.

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Sandra said: "She was wonky and curved but she is much straighter now. She has to have it until she is 18."

Gaja was also born with an asymmetrical face - a characteristic of Goldenhar syndrome - it means she has to do exercises to help with her chewing. She may need surgery in future if it is still causing her problems.

Sandra said: "The doctors don't know if this will be getting worse or if it will get better. Depending on which way it goes, they will decide on an operation later on in her life."

Gaja struggles with her hearing because she only has one ear and has to wear a bone conduction headband that helps - but is a temporary solution. Sandra spotted a doctor in the US on Instagram offering a surgery to reconstruct her ear.

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Gaja is eligible for the surgery in the US to open up a gap in her ear to reconstruct her left ear lobe.

Sandra said: "Gaja would look like she has a normal ear, and it would work like a normal ear as well because of the inner ear that she has.

"At the moment, from what we know, this is the best solution in the world to help this little baby to hear and develop like other kids, because in Poland they could operate on that ear, but only when she's about 10 to 11 years old."

Gaja would need to wait to be at least two-and-a-half-years-old for the surgery in the US and the family are raising funds for the CT scan to help doctors understand how to treat her condition.

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Sandra is raising money in the UK by completing the Yorkshire three peaks challenge alongside her friend Paulina Sroka, AGE, who set up a GoFundMe page.

They are aiming to raise £7.5k to go towards treatment. The family have already raised £80,000 through other fundraising.

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