I am Deelia Angelina Romano Fermin, 40 years old, have 2 Fantastic kids (5 2), and was confirmed to have Motor Neurons Disease on December 28 2012. To say it blew my world apart would probably be the biggest understatement I have ever made.
I was born in Hull then moved to Liverpool as a toddler where my Mum brought my little brother and I up alone. We grew up poor in money but rich in love. Unfortunately, our Family has suffered continual personal losses over the years but in the "Scouse" way, we were taught to take the bad with the good and we enjoyed a happy enough childhood.
I left School at 16 with average qualifications and sort of fell in to Office Administration. I worked locally for a few years and then was lucky enough to get an overseas position with a Travel Company and waved goodbye to my UK life for the next 12yrs. I came back for holidays at least once a year and Friends and Family were always visiting, so whilst I worked very hard, I played hard too and had an amazing time. I have lived - (without sounding pompous), pretty much all over the world on a shoestring and with the help of good friends - a magical life with astonishing experiences. I also met the love of my life and father of my children.
In 2007 I had had enough of the Fabulousness and when I became pregnant I came back to have my son. He and my half sister (I didn't know she existed), finding us were the only two good things to happen round that time. I.e. Redundancy each his Dad any I (same company, yeah nice thanks), plus a newborn, plus no money, plus UK bills equaled disaster. Depression kicked in for both of us and we coasted for a bit trying to be "normal". Then 2009 happened - major trauma for me and our family - looking back I don't know how we got through it to be honest. "“
Needless to say we split up and miraculously out of the darkness came my daughter early January 2011 (I say miraculous as we had barely keeping each other warm!).
Sadly, our worst family tragedy happened in February 2011. Shortly after that, I noticed I began walking funny as if a couple of my steps were clumsy and awkward which I instinctively hid or tried to hide from everyone without success. I went to see my Doctors a few times over the following months but could not get any answers. Gradually my hands had started losing strength beginning with my index fingers; my dodgy steps increased to become my dodgy walk; my balance was all over the place; my muscles twitched and my reflexes were exaggerated. I eventually had to go private and on June 17 2012 I was advised that it was provisionally MND. On one hand it made total sense but on the other it meant a 3-6 year life expectancy, a progressive, degenerative disease with no cure and I've got it! Sorry, I have what now? What about my babies? Where was my silver lining where I see my kids grow, advise my daughter about her first date and comb her hair for her first prom, warn my son about women and watch him play football with his father whilst I stand on the side shouting wrong football commands like I'm Arsen Wenger. I couldn't really take it in.
So, after six months of more tests (back on NHS), the provisional became the confirmed. In 18 months I had gone from being a strong, fit, independent woman to a slow, stumbling, awkward individual who can't even fasten a button on her own! I am currently trying to negotiate a walking stick, which is definitely a work in progress. If a person asked me "˜What frightens me the most about MND' I have to say the most frightening symptom of MND for, me is my twitching muscles. As each twitch is another muscle dying, and a realization that I can not provide or have a healthy relationship with my kids "“ The Dependents have become the ones on which I Depend, at the tender ages of two and five.
This brings us here. I am currently living in a house with stairs literally everywhere, 8 up to the house, 2 to get in, besides the normal 13, (the house for some reason has two bedrooms on one floor and a third at the top with the family toilet "“ Awkward, its like living in an M. C. Escher painting) the list goes on. I am repeatedly falling over and sustaining injuries and sometimes in front of my children so currently I cannot have both of my children staying with me as I am unable to provide adequate care for them both over 2 floors. Of all the emotions and heartbreak that this disease has brought with it, this is by far the most painful. Obviously, time is of the essence now as our quality of life together is almost non-existent I have to try to fix that. I heard something the other day that really stuck with me - Victims are Helpless - I refuse to be a victim!
Currently I am stuck in this catch 22. After 7 months and counting there are no council bungalows, only houses which may be adapted miles away from my Mum which is impossible as she is my full time carer. I am yet to find a private landlord who accepts Housing Benefit - should it be this hard to find a Bungalow so that me and my kids can enjoy our lives for the foreseeable future however long or short that maybe?
At present my lovely brother-in-law and a couple of my friends are organising fund raisers which blows me away. But there are also loads of my friends and family who have said they want to help but are too far away.
In my wildest dreams I would like to raise enough money for a deposit and a few months rent or if not it will be used for a Wedding reception as the children's Dad has re-proposed. We are not together yet but hope to be soon. So if you feel you can help me, no matter how big or small please do so. Its not about buying nice things or going to nice places, its about providing stability for my babies in an incredibly unstable situation.
I must count my blessings though because I have a Fantastic support network and as I told my son the other day, by the time I reach a point where I desperately need some help they will have hopefully found it!. Please don't think I have resigned myself to MND or am filled with self pity. It took some time but I own this disease! I am, I will continue to fight this bad boy with all I have, and I am asking you to help me too.
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