Viewing 7 posts - 1 through 7 (of 7 total)
  • #165025
    Terrified Mum

    My three year old daughter Nora was diagnosed with MD on Friday. We don’t yet know exact diagnosis as awaiting muscle biopsy and genetic testing in January. My world has fallen apart and I don’t know how we are going to cope as a family…in the past three weeks she has lost most movement in her legs and now says her arms and tummy hurt too. If there is anyone out there who can somehow reassure me that there is a way to cope, that would be amazing, as right now I don’t see any hope in this situation xx

    Ems
    Participant
    Posts: 0
    Joined: 16/12/2018
    #165026
    Reply To: Terrified Mum

    Hello and welcome Ems, sadly under such circumstances. You are in a very difficult position right now, just as I was when my son, and subsequently myself, was diagnosed. It does feel like you whole world has come to an end, but it hasn’t. You know better than anyone that Nora is, and always will be your little girl, having an MD variant will never ever change that. Have no doubt whatever MD variant she has, it will lead to added complications in both of your lives as well as all the other members of your family. Inside she is still the same Nora. You will learn to cope. More than that, you will learn to adapt, you will learn to know that whilst she has MD she can still do many things (look at the BBC reporter Nicky Fox who has MD). My own son has gone on to teach himself all about computers, he has taught himself computer programming and taught himself how to create websites. On the basis of that he has managed to buy his own house within five years and he is not yet forty. He has used his MD, (FHSD like me) to create his interweb ‘handle’ and he is a man of whom I am exceedingly proud. He , and indeed I, has taken the view that he different yes, but not incapable. My FHSD lost me two careers, so I trained for a third. He is planning to go to the US to maybe work in Silicon Valley. Not every important contribution to the world needs to be made from someone who is completely fit and without ailment.
    Much will depend on you and your family. You have the chance to help her write the story of her life through your encouragement, determination, and most important of all, your love for her, that will give her the will to succeed, regardless of the odds that you may think may be stacked against her now. Increasingly they are being stacked in favour of the person with MD, not just with the research that is going on into cures, but with the help and support that is available locally and nationally.
    As a parent, you do not have the luxury to ‘not cope’. Many times before I am sure you have simply had to get on and do what is necessary, from changing that once in a lifetime nappy to taking her to hospital when she was ill. In my time as a clinician, and my time as an MD patient I have seen so many wonderful and uplifting children. How well they deal with these adversities often makes me embarrassed to complain about my problems. Nora will be no different. This little lady will need you more now than ever, not just to help her but to guide her and most importantly encourage her. Without the encouragement to do more, to do better, to overcome the obstacles she will not develop as well as she could, just like any other child. Your role in that sense has not changed, its direction has. Your goal has not changed either. You and your family have always wanted her to be the best she can be. That is no different now.a simple Google search about children with MD will show many happy and determined young people. Why should Nora be any different?
    Until a proper, differential diagnosis, is made you will be a bit in the dark as to what will happen next. May I urge you not to try a DIY diagnosis by looking up the Sam Mr Google for the answers. They can be very frightening when taken out of context and without the right medical knowledge to understand what they all mean. If you can let us know roughly what area you live in then others may be able to put you in touch with local support groups. I would also urge you to keep coming back here and asking any questions you may have or even just to blow off steam. I will make no pretence that the road you will travel down is going to be smooth, it is not. But you should also remember that there are many of us here, and also connected to the specialists that you will see, that are there to help and support you and your family. you are not alone!
    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #165113
    Reply To: Terrified Mum

    Hi Ems welcome to forum.

    EMS its a massive kick right now but you will rally. you will find a way to fight and in that you and the family will cope and be stronger for it. Your little ones future is full of hope. achievements yet to come and adventures. Yes some things will have to be tackled in a different way but still bright future ahead. x

    you might find some useful groups on facebook. I have a condition called rigid Spine CMD. the group on facebook has lots of parents of young children who will be happy to talk and help you navigate the feelings your having right now. Im not a parent myself so feel under qualified. Even if your little ones condition isnt this specific group of Muscular dystrophy it might still help to join.

    Living with MD
    Cure CMD
    breathe with MD

    If you post your area I will ask MDUK if there is a parent group or care adviser in your area.

    But in the meantime feel free to chat on forum or with the parents and MD people in the above groups. It really helps to talk and see others living with MD be it the individual. the parents or siblings. together we are stronger.

    sending hugs at this difficult time

    Cat x

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #165121
    Reply To: Terrified Mum

    Oh Cat, thank you so much for your post. Knowing I am not alone helps a bit. We have good medical support in place, but I guess I am just overwhelmed at the moment with what might happen in the future. We’re based in Cheltenham, and any local support would be very helpful x

    Ems
    Participant
    Posts: 0
    Joined: 16/12/2018
    #165122
    Reply To: Terrified Mum

    Mike – thank you for your beautiful words, I have re-read them whenever I have had a difficult moment these past days (there are many!). I can’t thank you enough x

    Ems
    Participant
    Posts: 0
    Joined: 16/12/2018
    #165123
    Reply To: Terrified Mum

    I am happy to have helped you a little. Follow Cat’s wise advice, and keep us up to date. You will find many a helping hand here.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #165125
    Reply To: Terrified Mum

    Hi Ems,

    Welcome to the forum but so sorry to hear about your daughter Nora.

    Oxford is probably your nearest local support team, and has one of the best care teams.

    The details are:

    Heather Ryan – Regional Care Advisor based in Oxford, can cover appointments with adults only, available on Mondays, Wednesdays and Fridays.
    Dept Of Clinical Neurology, Level 3, West Wing, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU (covers Oxford, Bucks, Berks & Northants.
    E-mail: Heather.Ryan@ouh.nhs.uk
    Tel: 01865 234221

    Rebecca Moore – Regional Care Advisor based in Oxford seeing children only
    Dept Of Clinical Neurology, Level 3, West Wing, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU (covers Oxford, Bucks, Berks & Northants.
    E-mail: Rebecca.moore@ouh.nhs.uk
    Tel: 01865 231999

    Mary Quirke – Myasthenia Nurse Specialist also seeing Myotonic Patients.
    John Radcliffe Hospital, West Wing, Level Three, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU
    E-mail: Mary.quirke@ouh.nhs.uk
    Tel: 01865 240300

    I would recommend contacting Rebecca Moore.

    The whole list of areas and our care advisors is here: https://www.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/professionals-and-organisations/care-advisors/

    You can always call our Helpline to talk to them on 0800 652 6352 or email info@musculardystrophyuk.org. Our Care and Support team are always here to talk to you about your options, where to go for help, at diagnosis and beyond.

    Sending you our best wishes.

    Emma

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
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