Phoebe Roskell was just four-years-old when she became very unwell with bone marrow failure.

She became blood and platelet transfusion dependent and was told she needed a bone marrow transplant

Mum Jacquie Roskell, from Catterall, said after many hospital appointments and tests, doctors discovered that Phoebe had a rare and currently incurable disease called Dyskeratosis Congenita (DC).

The telomere biology disorder only affects one in a million people worldwide in which the telomeres - the caps at the end of each strand of DNA - are not present and therefore the DNA becomes damaged and cells cannot do their job.

This can lead to the premature ageing of cells and can cause life-threatening complications as well as shortened life expectency.

Jacquie Roskell, 43, from Catterall, told LancsLive: "In May 2017 Phoebe, then aged just 4-years-old, became very unwell and was found to be in bone marrow failure. She became blood and platelet transfusion dependent and we were told she would need a bone marrow transplant.

"In August of that year and after many tests it was discovered she had the rare and currently incurable disease Dyskeratosis Congenita (DC).

"DC is a telomere biology disorder and only affects one in a million people worldwide. Telomeres are the caps at the end of each strand of DNA that protect our chromosomes, like the plastic tips at the end of shoelaces. Without the coating, shoelaces become frayed until they can no longer do their job.

"Just as without telomeres, DNA strands become damaged and our cells cant do their job. This in turn causes premature ageing of cells such as bone marrow hence why Phoebes failed. Telomeres naturally shorten as we age, but Phoebe was born with exceptionally short telomeres like those of a 100-year-old woman."

Many life threatening complications can be cause by DC, such as liver and lung failure, higher chances of cancer and shortened life expectancy, says Jacquie.

Children with this mutation are unlikely to live longer than 16-year-old.

"There are currently 15 gene mutations identified with this disease and the one Phoebe has is called TINF2," Jacquie explained.

In December 2017, Phoebe's older brother Woody heroically donated his stem cells for her bone marrow transplant at The Royal Manchester Childrens Hospital. He saved her life.

The bone marrow failure was successful, however the disease had not yet been cured.

Jacquie, 43, said: "The treatment was gruelling, and her recovery was long and exhausting. The bone marrow failure was successfully cured but the disease is not.

"Phoebe suffers with episodes of extreme fatigue and exhaustion, joint pains, headaches and migraines. Injuries such as a sprained wrist take longer to heal for Phoebe, and she is still very susceptible to common viruses following her transplant.

"She attends many hospital appointments always in Manchester and is regularly seen by different medical teams including Haematology, Respiratory, ENT, Ophthalmology, Dental and Oral Medicine."

"Phoebe has suffered so much in her very short life. But when she is feeling well she is like a pocket rocket and there is just no stopping her. When she feels unwell she crashes and needs time to recover again,"

"The disease is unpredictable and although much research has been done into Telomere biology disorders there is still a long way to go.

"Much research is being carried out by the incredible charity Team Telomere - that support us as a family. Their aim is to hopefully find a cure for this cruel disease and fingers crossed it is in Phoebes lifetime."

That is why Jacquie is helping to fundraise for Team Telomere.

The charity supports families worldwide in their battle with DC and related Telomere Biology Disorders who often face multiple complex illnesses such as bone marrow failure, lung fibrosis, cancer, and many other challenges.

It also helps to encourage the medical communitys research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

To help raise money for Team Telamore, Jacquie is co-organising a pre-loved wedding sale along with her friend Samantha Smith who is the events manager of the Wyrebank in Garstang.

The sale will be held at Wyrebank on the Moorings on Sunday, March 1 from 11pm until 1pm.

Samantha told LancsLive: "The idea is for brides and businesses to sell their wedding items to future wedding couples.

"People can also donate wedding dresses and bridesmaid or we will take a percentage of the sales, and sell them for them."

Bridal stalls cost 15 and business stalls are 40.

All proceeds will be going to Team Telomere.

Alternatively, donations can be made directly via the website here.

You can also find more details on the Wyrebank pre-loved wedding sale here.

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The young girl diagnosed with 'one in a million' genetic disease - LancsLive