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Andy and I are running the Great South run with family and close friends to raise money for The Neuro foundation.
Along side this other events have taken place which people have been adding sponsors to this page. Including
Andy and his co workers walked 100k.
Liz and Dave did the 5k, 10k and 13 mile run in Disneyland Paris over a weekend.
We are hugely thankful for everyone’s help in raising money for a good course
Our beautiful daughter Mila was diagnosed with neurofibromatotis type 1 (NF1) at just 8 months old. It had been noticed that Mila was “a floppy baby” and after a follow up appointment at the hospital due to a milk allergy admission they tested Mila for NF1.
Neurofribromatosis is a genetic condition causing Tumors to grow on nerves throughout the body, it can also cause many other disabilities ranging from epilepsy, austism, blindness, poor mobility, curving of the bones, high blood pressure, ADHD, ADD, some occasion’s brain tumours that can be cancerous and this is to name only a few.
To say we were overwhelmed and heartbroken is an understatement, Mila’s diagnosis day changed our lives forever and is a day we will never forget.
We spent days googling NF1 and images to find information (not sure it was a great idea) but we needed to know more about it. How can our perfect baby girl have something that we cant even pronounce, when she looks happy and healthy? The hardest thing to accept is the unknown, not only does she have an incurable genetic condition but the other health issues can happen suddenly “out the blue “ over her lifetime and we have to take each day as it comes.
Mila has appointment after appointment and that in itself takes away a part of her childhood innocence. Mila already has hypo-mobility syndrome and low muscle tone particularly in her legs and will sometimes suffer pain with it.
We were told not to expect Mila to walk before she was 2, she has already defied the odds and is walking, unsteady, granted but she is not 2 until July and we are so pleased she is doing so well. With physio help we hope she will continue to get stronger and not need aids to help in future.
Mila is smiley, funny, very short tempered and generally a joy to be around. She has everyone including her brothers wrapped around her little finger.
Most of you who know us, would know Andy and I are not normally the sort of people that ’bare all’ but we wanted to share a small insight to our daughters health and why raising money for The Neuro foundation is important and close to our hearts.
The Neuro foundation offers various support for people/families suffering with NF. The charity have support groups and link families together on the web page, they also fund the specialist nurse which is a huge support to everyone involved including offering education to schools to help children with their education.
Thank you so much for taking the time to read and any amount you wish to donate will be gratefully received by the charity. The runners are:
Myself, Andy, Matt Fishwick, Liz Meldrum, Dave Meldrum, Lizi Garner, Sam Dugan and Paul Martin
The Meldrum’s xxx