Miracle meds for little Eliza

Little Eliza Gray, from Glasker, is one of the first children in Northern Ireland to trial the life-altering drug called Kaftrio.

The powerful medicine, which the Gray family tirelessly campaigned for, is designed to regulate the symptoms of CF and increase life expectancy.

Cystic Fibrosis is a rare genetic condition that impacts every cell in the body.

It causes mucus to build up in the lungs and digestive system, and can often lead to chest infections and problems digesting food.

People with CF, or ‘the invisible illness’ as it is commonly known, are also at high risk of developing diabetes.

Eliza’s condition was discovered when she was just two weeks old, during a routine heel prick.

First-time parents Abbie and Richard Gray were taken by complete surprise when their new-born baby received her CF diagnosis.

Abbie paid tribute to Eliza’s health visitor and staff at the Royal Victoria Hospital, Belfast, for their guidance and support.

“The team filled us full of hope, when it really felt like there was no hope.

“Our health visitor walked the journey with us in those first few days and weeks.

“The invisible nature of the condition can be very difficult, as Eliza is so vibrant and full of life.

“We are in awe of our little girl! She continues to take every step of this journey in her stride.”

From just two weeks old, Eliza has been on around 15 medications each day, but none as powerful as her newest addition – Kaftrio.

The youngster also receives daily physio treatments and doctors are majorly impressed with her progress.

“She loves every part of her physio,” said mum Abbie.

“It has been amazing to see her grow. Her little body is constantly working overtime to stay healthy.”

Kaftrio first came to Northern Ireland in 2020, but has only just been licenced for children between the ages of two and six.

Abbie spoke of her “joy” that Eliza is the one of the youngest children to benefit.

“We consider ourselves incredibly blessed. It just feels like every door has opened for Eliza.

“Friends, family and the local community have also been amazing, and we thank them for their prayers and petition though this process.

“We can already see physical differences in Eliza, it’s almost as if her body is taking back control.”

But, due to an inflated price tag from the medical supplier, and pressures on the NHS, there is no guarantee that children under two and unborn babies with the condition will have access to the drug.

Abbie is determined to challenge this. She said: "It seems unbelievable that we have been given this lifeline and other CF children have not.

"We will be relentless in our campaigning to prove how beneficial this drug can be.”

Battling Cystic Fibrosis comes with many challenges, despite pressures eased by Kaftrio.

Due to the nature of the condition, two children with CF cannot be in the same room, and common infections can quickly become more sinister.

These are hurdles Abbie and Richard are constantly preparing for. “CF does bring anxieties each day,” Abbie said.

“Every new environment comes with a new risk and fears attached.

“Each cough and cold causes worry that this could be something more serious, but analysing these things is now normal for us.”

Abbie said the benefits of the drug greatly outweigh all else.

“Kaftrio takes away the prospect of staying in hospital for prolonged periods.

"It reduces the risk of Eliza needing antibiotics or suffering from liver damage.

“She has been on a miracle journey and this next step is absolutely massive for her!”

But the fight doesn’t end here for the Gray family, as they continue to campaign for greater access to the medication.

Abbie said: “This drug is by no means a cure, it is an ongoing treatment.

"There are other babies out there who desperately need drugs like Kaftrio, and we will stand with them.

"We will keep fundraising not only for vital medication, but also for CF research.

"It will be so special for us to pass the baton to Eliza in the future, so she can take ownership of her Cystic Fibrosis and help others fighting the good fight.”