4 Ladies & A Man Fighting MND
Hello everyone and thank you for visiting our go fund me page for Darren.
Darren is 50 years young, he has 3 daughters and a wonderful wife, this year he will become a grandfather for the first time and he is beyond excited for the arrival of his first grandchild. He has worked hard his entire life providing everything for his family, he loves nothing more than having all of his family around him and he is always eager for a gathering especially with his brothers and sisters who he adores. We were so lucky to throw him a surprise 50th last July and it was such a wonderful day with family and friends.
The goal of this fundraiser is to raise as much money as possible to provide Darren with the best quality of life. When Darren was diagnosed with such a devastating illness we felt so helpless, so now we feel we can help him by raising money to provide him with the necessary requirements for him to live a more comfortable life. All the changes required to make him as comfortable as possible will cost an enormous amount of money, somewhere in the region of €40,000+ and with Motor neurone disease already effecting Darren he had to unfortunately retire from work after 30+ years and his wife Esther also having to leave her Job to become his full time carer, so it is impossible for us to generate that kind of money. We know it’s a lot to ask but god loves a trier!
Darrens journey began late 2019 when he started to notice his grip had weakened and he couldn’t play he’s favourite game of darts, he also found that he couldn’t fulfil his normal workday due to weakness in both his arms and legs. Fast forward August 2020 when Darrens diagnoses of Motor Neurone Disease was confirmed. This hit Darren and his family hard, we couldn’t believe it, our dad? Are they sure that’s what it is? And why now? So many questions followed and lots of sadness.
Like most of you we didn’t know what motor neurone disease really was and how fast it can all happen, we now know what we are facing and time is against us. The HSE offer unrealistically means tested grants, we have applied for a grant but we don’t have much hope for that and this will take a long time to come through if it does. Darrens legs have deteriorated so much already and could stop working completely in the next few weeks but we don’t know that for sure which is why we need to adapt our home ASAP.
Motor neurone disease will take a lot of our dad, it is attacking his body fast. The average life span of a patient diagnosed with MND unfortunately is 1-5years and dads type is ALS which attacks upper and lower neurones, so it can’t get any worse than this. We want him to live out the rest of his life as comfortable as possible, this may be for another 20 years we hope, but he requires a lot of care already.
Day to day darren has a lot of struggles but at the moment walking up the stairs and eating is increasingly difficult. Unfortunately there is a lot more to come and this disease is working fast. When we adapt our home it will mean dad will have space for his electrical wheelchair as there will be enough room for him to move around which we currently do not have, he will have his own bedroom and wet room which will give him the privacy he needs. When they get an adapted wheelchair accessible car it will mean Darren can enjoy getting out of the house and make memories with his family. All of these changes will give him a better quality of life and to see him happy and comfortable is all we ask for.
I asked dad what he looks forward to the most and he gave me 3 things, meeting his first grandchild in June, hopes for a drug trial this year and of course for the pubs to reopen so he can go for a nice pint of Budweiser (it’s his favourite ). Even after everything that has devastated him in this past year he is still so positive, We really can’t explain to you all exactly how positive he is, it is incredible to be around him and to see how the simplest of conversations or a nice sunny day makes him so happy, he enjoys just being in the moment and observing, he really is one of the most amazing, strong and wonderful people I have ever met.
We hope to not only raise enough money for Darren, we also want to create some awareness for this devastating disease. If we could ask for one wish we would ask for a cure and we know anyone dealing with a loved one who is terminally ill would wish for the same. We will leave the link to the Irish Motor Neurone Disease Association so feel free to do some further research of MND and we hope if you are ever faced with it you will be better prepared, because there is no stopping it, you just have to live with it and be ready for every single step.
We will have our fingers, toes and even eyes crossed that we hit our target and will
also be hopeful that we have our wonderful Dad with us for as long as possible.
Thank you all for taking the time
to support us, no matter what comes our way, we will continue to fill our home with love and laughter and we encourage you all to do the same.
All our love,
Darren, Esther, Amanda, Leanne & Megan xxxx
Link for Irish Motor Neurone Disease Association: https://imnda.ie
