Ellie Dixon of Celbridge
Thirteen year old Ellie Dixon looks like any other teenager, but bubbly Ellie has a lot more to contend with than most youngsters. For seven years, young Ellie has undergone rigorous treatment for Neurofibromatosis (NF), a genetic condition that causes tumours to grow in various nerves across the body.
Since March 2012, Ellie has been consistently having chemo treatment on and off, but her positive attitude and insistence on attending school immediately after treatment, and just ‘being herself’ has led to a nomination in this year’s NF Fighter Campaign Awards, launched by MMA coach, John Kavanagh last month.
It was Ellie’s parents, Suzanne and John Dixon who decided to nominate their tough little daughter for the ‘NF Fighter of the Year’ category.
“Ellie’s condition has resulted in tumours developing on her optic nerves which are inoperable so for 7 years, she has been dealing with NF and undergoing extensive chemo therapy.
The treatment is exhausting and leaves her feeling so tired but she doesn’t lie under it and goes straight back into school the following day. She’s a great kid, never complains, she just gets on with it and takes it on the chin. We are all so proud of her”.
Not only has Ellie to deal with NF but has scoliosis and dyspraxia. “She is very curious now about the condition and ongoing treatment and naturally, wants to be fully informed on everything. Half days from school on Wednesday is normal for her weekly trip to Crumlin Hospital for the chemo but it’s straight back to school (St Wolstan's, Celbridge) the next morning without complaint”.
Parents Suzanne and John have two other children, Aaron (19) and Leah (17) and they are all rooting for Ellie’s nomination as ‘NF Fighter of the Year’.
Ellie on her confirmation Day with parents Suzanne and John, brother Aaron and sister Leah
“Her condition means exclusion from some activities such as PE and sport in school” added mum Suzanne. “Swimming is out of course as has a Broviac line inserted in her chest for the chemo and this can’t get wet – even showering merits arduous preparation to prevent the line getting wet”.
World famous MMA Coach John Kavanagh launched the NF Fighter campaign last month along with Rubén Curran (7), Rafa Curran (4), Lee Dowling (9) and Ella Dowling (4). This is a nationwide campaign that celebrates those who live with Neurofibromatosis (NF), a genetic condition that causes tumors to grow in various types of nerves anywhere in or on the body, and which can affect the development of tissues such as bones and skin. As there is no known cure or prevention at present, NF is a lifelong condition.
The campaign was launched by The NF Association of Ireland to raise awareness of the condition, and people are asked to nominate their ‘NF Fighters’, those who fight against and live with the condition every day. There are a number of categories including ‘NF Fighter of the Year’, ‘Medical Professional of the Year’, ‘Family Member of the Year’, and ’ Fundraiser of the Year’ . To nominate your NF Fighter log on to www.nfaireland.ie.
Anyone can nominate and then the NF Asociation will go through all the nominations and host an ward ceremony later this summer, date TBC.
Speaking at the launch John Kavanagh said “I am delighted to help launch this fantastic campaign. I’ve met some of the kids here today who live with NF every day and they really go through a lot, so if I can help them out by helping to raise awareness and help get them support, then I am happy to do it”.
There are two types of NF, with approx one in 2,500 people being born NF1. This is the most common variant and early stages include flat brown birthmarks on the skin, freckles in unusual places and lumps or bumps on the skin. Some children with NF1 will have learning difficulties and one or more medical complications, related to NF.
NF2 is much rarer and affects one in 35,000 of the population in Ireland. People with NF2 develop tumours typically in the brain and spine, which can cause varying degrees of hearing loss and mobility problems. These might occur later in life and to varying degrees.
Feature image by Robbie Reynolds shows MMA coach launching this year's awards with brothers Rubén (7) and Rafa Curran (4).
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