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  • Northside East

Lee is rewarded for helping sister who has a rare medical condition

Wednesday, 20th December, 2017 1:00pm
Lee is rewarded for helping sister who has a rare  medical condition

Shannon Brady, Lee Dowling, Louise Oā€™Keeffe and Gareth Curran, chief executive of the NF Association of Ireland, pictured at the NF Fighter Awards and Charity Ball at the Listowel Arms Hotel, County Kerry. PHOTO: JDM PHOTOGRAPHY

Lee is rewarded for helping sister who has a rare  medical condition

Shannon Brady, Lee Dowling, Louise Oā€™Keeffe and Gareth Curran, chief executive of the NF Association of Ireland, pictured at the NF Fighter Awards and Charity Ball at the Listowel Arms Hotel, County Kerry. PHOTO: JDM PHOTOGRAPHY

Shauna Bowers

A NORTHSIDE boy recently won an award for helping his younger sister who has a rare medical condition.

Lee Dowling (9), from Swords, was honoured at the national NF Fighter awards. 

Lee’s younger sister Ella was just over-two-years-old when she was diagnosed with a rare form of Neurofibromatosis 1 (NF) called Neurofibromatosis Microdeletion Syndrome. 

Only five to 10 per cent of NF1 cases are diagnosed as Neurofibromatosis Microdeletion Syndrome and just over 170 cases of the disorder have been reported to date.

NF is a genetic condition that causes tumours to grow in various types of nerves and can then cause delays in the development of tissues. 

The condition currently has no treatment or cure which means that this is a lifelong condition.

Ella was also diagnosed with reflux and multiple allergies, hypermobility syndrome, autism, intellectual disability and motor and speech delays.

The disorder is so rare that it was difficult for the family to completely understand it all and even more difficult for them to attain support. 

This meant the children’s mother, Louise O’Keeffe, spent a lot of time going to hospital appointments and trying to make sure Ella is safe.

Lee is very understanding when it comes to dealing with his sister’s condition and that is why he was nominated for this award. 

Louise nominated Lee because he always supports his sister Ella. 

He goes to doctor’s appointments with her and always tries to keep her entertained.

The NF Fighter campaign was launched this year by well-known MMA coach John Kavanagh. He lent his support because he felt it was a worthy campaign.

The NF Association of Ireland supported the event because they want to raise awareness of the hardships of the condition and celebrate the support that those who deal with NF show on a daily basis.

Gareth Curran, head of the NF Association of Ireland, presented Lee with his award and spoke about why he deserved to receive it.

“Family plays such a huge role in everyone’s life especially those who have NF so it’s great to be able to acknowledge and show appreciation to family members such as parents, brothers, sisters etc, who are there to help in any way they can,” Mr Curran said.  

“I am delighted to present them with these awards and acknowledge the hard work and support they give every day.”

Louise recently set up a support group called RARE in order to help parents who have children with rare medical conditions.

Read the digital editions of the Dublin People Northside East, Northside West & Southside here