Summer Rose Thompson was diagnosed with a rare genetic condition and had to have open heart surgery before her first birthday.
Her parents hoped the worst was over but now, before she reaches her second birthday, she has been diagnosed with leukaemia and faces the fight of her life.
Her condition, Noonan Syndrome, can lead to a range of complications including heart defects and doctors told parents Becky and Gareth, from Whincover Drive in Farnley, she would have to have surgery.
Mr Thompson, 36, said: “They wanted to do it on her first birthday and we said ‘no’. Not really the present you want is it?”
Mrs Thompson, 37, said: “We thought it was the worst day of our lives. Little did we know.”
Due to her condition, Summer, one of seven sisters, returns to hospital regularly for blood tests. It was after a visit last month that her parents were called in to be told their daughter had leukaemia.
She has recently undergone 10 days of intensive chemotherapy. Mrs Thompson said: “It’s just a black hole, we don’t even know what day we’re on.”
But she said the care “tough little cookie” Summer had received on the children’s cancer ward at Leeds General Infirmary had been second to none and that the children “got on with it”.
“They just amaze you. If it was an adult they would be in bed crying.”
Just days after the diagnosis, Mrs Thompson gave birth to Summer’s younger sister and stem cells from the placenta and umbilical cord are to be used as part of the treatment.
Mrs Thompson said: “We didn’t have a name for her at first. I thought of Faith, but someone suggested Hope. I thought in the circumstances it just fit.”
Summer’s aunty, Kirsty Monaghan, who lives in Settle but is originally from Wortley, wanted to raise money for Cancer Research UK after her niece was diagnosed and shaved her head yesterday.
Miss Monaghan, 23, said: “We put it on Facebook and it really took off, there were donations flying in left, right and centre.
“I’ve done the Race for Life before and I enjoyed that but it’s never been as close to home as this before. It’s really sad, Summer has just grown her hair.”
To donate visit www.justgiving.com/fundraising/K-MONAGHAN
WHAT IS NOONAN SYNDROME?
Noonan syndrome affects one in 2,500 people in the UK, according a charity.
The Noonan Syndrome Association said 80 per cent of people with the genetic condition have heart abnormalities.
It said there is a “distinctive Noonan ‘look’ including heavy eyelids, tightened skin around the neck, and ears set low on the head”. Speech and hearing, as well as development, behaviour and intelligence can be affected.
Growth is often affected, with many children and adults having short stature.
Anyone interested in learning more about Noonan Syndrome or donating to charity can visit www.noonansyndrome.org.uk.