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    A small victory - Paediatric Lokomat

    I just want to share what I feel is a small victory. Sorry if I go over stuff you have heard before but just to give you the full story. My son Sean (the boy with Miss World pics) is 5 yrs old T11 since 07 Feb 06. The Medical profession in Ireland take a very conservative approach to SCI treatment to summaries - "He will do well in a wheelchair". His rehab in the last year has been passive stretching at home and a standing frame. I had to fight to get a Motomed for him.

    After hearing about the Paediatric Lokomat I asked about Sean being able to use this and was told that with Physio and hydro could obtain the same results (which he has no option of getting in Ireland). Also his tone was too high and would not be able to use Lokomat.

    I organised a private trail session in Dec went very well Sean walked nearly 400m in less than 30mins (see video)

    Anyway in January spoke to the consultant who said he would not be able to use Lokomat (showed him the video and report) He agreed to sign the E112 form (this enables EU members to avail of treatment in another EU state). We received the okay for the funding from the HSE 2 weeks ago and I heard today that on the 26th Feb he will start a 5 week session.

    In the meantime funding had been obtained to get a Lokomat in the Rehab in Dublin but not the Paediatric Legs. I have been in constant contact with the main fundraiser to get the Lokomat in NRH. She has been using the footage of Sean trail session to promoting the Lokomat. She had a meeting with the HSE and after seeing this footage (she assures me) they have agreed to fund the purchase of Paediatric Legs. We are going to get videos of Sean treatment and hope to use them to push to get funding for more Lokomat in Ireland.

    I know that this 5 weeks might give Sean nothing or if he gets something that if the treatment is not continued any gains will be lost. My hope that there will be gains and that even though he is no longer a patient of the NRH he could continue the treatment there on the new machine (no guarantees) or will encourage the CRC his current hospital to fundraise to get a Lokomat.

    I have some hope but is is like "yes there is light at the end of the tunnel, its just some days that it appears to be an on-coming train and other days you can see it as sunlight". I don't know if I am due an on-coming train or a drop of sunlight.

    Sorry if I have dragged on. I have read many of your posts i despair the hope stem cells offer - will my son be in his 50's before we have moved on from rats. At least this is something we can do now and if we can go someway to change the conservative attitude to SCI rehab in Ireland it is something.

    Just wanted to share
    Last edited by soimumireland; 02-09-2007 at 08:03 PM.

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