Funds For Motor Neurone disease- Godwin House Charity week

Hello all, my name is charlotte jones-butcher I am a current year 13 student of Godwin house at Wanganui collegiate school. This upcoming week myself and the rest of Godwin house are raising funds for the Motor Neurone Disease foundation that has a deep heart felt connection with myself and 2 others within our house.

I am here today to share with you the way in which Motor neurone disease has affected my life significantly.

In my year 9 my heart shattered as I was told that my dad and hero, had MND at age 53, with a life expectancy of 2 to 5 years.

We had noticed my dad’s speech starting to deteriorate, but initially doctors thought it was because of a minor stroke. A family friend of ours who is an Ear nose and throat doctor suspected it was MND and a neurologist in wellington soon confirmed it.

Being so young, I was clueless as to what was going to happen and the reality that my father was going to leave soon began to sink in.

After my dad’s diagnosis we started to notice rapid change in his movement, speech, energy levels and weight. As time went on, my life become very different from the average fifteen-year-old girl’s. I spent as much time as I could helping with things like feeding my father through his stomach peg, brushing his hair and tying his shoes; things that were impossible for Dad to do for himself due to his rapidly progressing MND. Having to help my Dad, especially talking through a whiteboard and iPad, really woke me up to the realisation that he was deteriorating before me. Instead of the usual “Love you to the moon and back” at night, there was just silence, and it really hit me.

As time went on my mum, sister, and I spent numerous days and nights in the hospital – a place I now fear with our hero as he dealt with breathing difficulties and stomach peg insertion.

Through family and friends, we had heard about the stem cell treatment at the Dr Hino clinic in Mexico. Although there were no guarantees this treatment would work, we gave it a go and my parents flew to Mexico 1 month later for dads first treatment and then returned 3 months later as a whole family, however this treatment was proven to not work on my dad.

Since my father’s diagnosis we have participated in the Walk 2 D’Feet MND to raise awareness for this cruel disease and give money towards the research to one day find a cure as there is currently no stopping this disease and known cause.

One year and 24 days after my dad was diagnosed, my father passed on the 25th of September 2017. I was 15, 15 when my capable father was taken away from me and the day my world fell apart, after being trapped inside a body that no longer worked my dad was put at rest leaving the pain he endured throughout his battle behind.

My father was a strong, hard-working man who loved all those around him dearly. I’ll always remember him as an active man with a love for quad bikes rather than the incapable man he became, and most importantly as the world’s best dad who put his two girls first, giving us everything we could possibly need.

MND changed our lives, making us aware of something we never knew existed: a disease I would never wish upon anyone. I now go forth in life knowing I will never have my father to be there for important moments that a girl needs her dad like : teaching me to drive, being at my 21st, and eventually walking me down the aisle. MND took my dad, hero, and the man I looked up to most in life.

This disease is something so close to my heart and also my family’s aswell as 2 fellow members of godwin house. Please get behind this charity this week to help find a cure for such a cruel disease that has taken my hero away from me.

Thank you.

Charlotte Jones-Butcher