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  • Debbie Kennedy
    commented 2019-03-15 15:29:34 +0000
    My name is Debbie Kennedy. I live in Zimbabwe and 24 years ago I lost my son to hydrocephalus. It is a distressing story and it has taken me a long time to come to terms with what happened. My mission now is to provide shunts for those babies born with hydrocephalus, specifically for the underprivileged. The situation in Zimbabwe is dire. I have set up a Trust for this and am in the throws of working with the Ministry of Health to get an MOU. I have no idea where I can source the shunts and is there an organization out there that would be willing to assist me in this matter. I do not know where to turn and these babies need urgent assistance. Any suggestions would be greatly appreciated. With my thanks. Debbie Kennedy.
  • Emma Curry
    commented 2019-01-22 09:41:33 +0000
    I recently had a baby and she was born with spina bifida she also has a very bad curve in her spine. The curve in her spine is blocking one of her lungs from working properly. She’s been on a cpap machine since she’s born . Has anyone been through this and help me out with how to help her.
  • Amanda McGrath
    commented 2018-11-12 13:32:21 +0000
    Daughter was diagnosed with Hydrochephalus due to Aquaduct Stenosis at the age of 4months old. She had her first shunt inserted and no issues till the age of 10 when a revision was required to replace the tubing and then at the age of 12 a programmable value was inserted. We have been extremely lucky and we still are but this year she has had numerous issues. She has had 5 revisions this year alone and was eventually diagnosed with slit ventricle syndrome which now results in her having some seizures that she has never had before. She is now 16 years old so this is not something that is nice to deal with at this age.
  • Robert Burke MD MPH
    commented 2018-08-27 14:51:29 +0100
    I an a primary care pediatrician in Providence Rhode Island USA. I am an associate professor of pediatrics at the Warren Alpert School of Medicine at Brown University and a staff pediatrician at Women & Infants Hospital neonatal follow up team and Rhode Island Birth Defects Prevention Program. My clinical practice for over 40 years ahs focused on care of children with physical and developmental disabilities. I am member of the Spina Bifida Association of America and the medical consultant for the Spina Bifida Association of Greater New England. My wife and I drove over from Galway to attend your recent conference in Westmeath; which was both informative and enjoyable. I was and am very interested in you SB survey.

    Will keep in touch!

    Bob Burke
  • Kiera
    commented 2018-06-07 18:54:42 +0100
    My name is Kiera. I am 43 years old to a mother of a gorgeous little boy called Luke who is 2. I was born with Spina Bifida and after surgery after surgery and most of my happy youth spent in hospitals, I was able to walk and live a happy life. Of course there are complications to my body and restrictions but the world was my oyster. After losing several children I finally had a son to call my own. However the pregnancy took a great toll on my body and resulted in a lot of nerve damage on an already fragile body.

    Last year a doctor gave me a CT nerve root injection. I was told the had completely researched the entire thing and that this was the best option for me. I was paralyzed the moment it was done. That was 9 months ago and the last year has been the most horrific of my life. Not being able to spend the time with the son I craved for so long either has been very tough. The doctors are ignoring me and no one wants to know me so I sit at home in my wheelchair living a different life.

    Is there anyone out there that this might have happened to? Am trying to get to the bottom of what might have happened. He used Lidocaine in the mixture and I have heard this is contraindicated but I cant find any information about this. Am trying to get a diagnosis so perhaps I can start getting a cure of some kind.

    I live in hope. I was reading all the stories here and they are heartbreaking. I cannot imagine being the parent of young children and coming up against so many walls. The HSE is a shocking system.
  • Megala Gandhi
    commented 2018-03-27 10:53:24 +0100
    Hi i have a daughter had spina bifida, hydrocephalus, club foot, CDH, cleft plate and bladder and bowel incontinence (Neurogenic Bladder).lower limb paralysiis. she has undergone 13 surgeries for the corrections still ……….. waiting for the surgeries currently she is 7 years old. her learning and mental abilities are very good. she likes to go the school and learn. we are living in bahrain the education for physically challenged child is very costly we have less resources for that just doing home school.

    in what way you can help me

    thank you
  • Jenna Vargas
    commented 2017-08-17 19:56:53 +0100
    Hi my name is Jenna, I was born on November 19th 1997 of course with Spina Bifida and water on the Brain so the day after I was born my neurosurgeon had to do Emergency surgery to drain the excess Fluid and so that being said they put in a shunt. Although Living with Spina Bifida isn’t always Easy throughout my 17 surgeries I still smile!😊 Because I know my life could have been a lot worse but I just thank God that it isn’t!🙌🏻🙌🏻
  • christopher greenhalgh
    commented 2016-06-14 23:01:13 +0100
    Our grandson Matthew Greenhalgh, has been waiting for leg supports for two years, his condition is getting worse by the month, he is in constant pain and his legs are becoming more deformed. Despite his parents pleas, the HSE done absolutely nothing to to alleviate Matthews pain. Matthew suffers a great deal because he has no leg support and every step is painful.

    Will you help?

    Christopher & Esther Greenhalgh
  • Aine Mc Donnell
    commented 2016-01-18 01:41:30 +0000

    My name is Áine Mc Donnell I was born on the 9th of June 1976 my parents were very young and I was their first born and the eldest of five children. I live in Belmullet County Mayo which is a very rural isolated area in the West of Ireland. I live with my parents at the moment but I am hoping in the near future to move into my own purpose built house in my local community.

    I was born in Mayo General Hospital in Castlebar with Spina Bifida and Hydrocephalus and was immediately transferred to Our Lady’s Hospital for Sick Children in Crumlin. I spent many months in Crumlin in that first year undergoing the start of a myriad of surgeries that would be performed throughout my life in fact my parents have told me I had over one hundred surgeries by the time I was three years old. My parents have also told me that my story is a story of survival against the odds.

    My childhood was one of many hospital visits and medical procedures but it was also one of happy memories and the knowledge that I was surrounded by a family who loved and cherished me for who I was and for who I have become, I have parents who always wanted the best for me and encouraged me to be the best I could be. My Dad was a teacher in the local vocational school and my Mum was a nurse. It is because of them and their unwavering support and encouragement that I was educated in the local primary and the vocational school my Father taught in, going on to achieve 5 honours in my Leaving Certificate despite being out for many months due to surgery. School life wasn’t easy and I had to work very hard and had many challenges to face along the way including being bullied for most of my school life because I used a wheelchair but I strongly believe that as the saying goes “What doesn’t kill you makes you stronger”. I had some amazing teachers including my wonderful Dad who encouraged me and brought out my potential I always loved reading and my parents remarked that I was “reading the newspaper” before I could talk.

    I have always had a thirst for knowledge and when I was twelve I found my flair for writing and have been writing since. I attended college first in University of Ulster Coleraine and then in UCD in Dublin these attempts at a college education unfortunately did not work out for me for many reasons, however I am also of the believe that there is a calling for everybody and I finally found mine at the age of thirty eight when I did a Job Shadow in conjunction with Irish Association for Supported Employment and The Irish Wheelchair Association (IWA). I worked for a week in the communications department with Anita Matthews who is Public Relations, Communications & Marketing Coordinator with the Irish Wheelchair Association and I loved every minute of it and it was then I realised I wanted to work in Public Relations, it was because of this week and Anita’s encouragement that I tentatively decided to give further education another go and I enrolled in a Diploma in Public Relations with Event Management, it wasn’t without it’s difficulties and there were many times when I became very discouraged and I honestly thought I would never complete it but I am proud to say that I completed my diploma in December and I hope to undertake a postgraduate in a few months but haven’t quite decided what I will do it in yet. My family and friends and the wonderful teachers and mentors that I have met along my path of life have shown me that with determination and hard work anything can be achieved.

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