The Buzz Blog - Liams Lodge

PostedSep02

1st Respite Centre For Children with Rare Disease

Posted by Bee For Battens in Liams Lodge | 7 comments

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Bee For Battens are pursuing the developement of a state of the art respite centre for children with Rare Disease. The charity have entered in a contract to purchase a 5 acre site located less than a mile from Kerry General Hospital.

The centre, will be the first of its kind in Ireland and only one of a handful in Europe. The facility which will be designed to initially accommodate 10 families a week and offer them a purpose built respite centre in Irelands leading tourist county, Kerry. In total upto 520 families could be accommodated annually.

Initial discussions have taken place between Kerry County Council regarding the proposed developement.

The charity are hoping to approach the HSE and Dept Of Children regarding developing a partnership for the operation of the facility. 

The centre, which is being tagged as "Liams Lodge" will be built by The Saoirse Foundation, the charity behind Bee For Battens. Tony Heffernan, a founder and CEO of the charity is hoping to use the "Niall Mellon Trust Charity Model" to build the facility and will be asking tradesmen, builders and suppliers to get behind the facility and donate their time and products. 

Fundraising for the event will be coordinated by Saoirse Foundation and Bee For Battens, with support from other charities and rare disease organisations being asked to support its developement.

Tony Heffernan, who represents all patients and parents affected by Rare Diesease on a Dept of Health Steering group, tasked with the development of Ireland National Plan and Strategy for Rare Disease.

With over 7000 known rare diseases, with tens of thousands of people affected in Irelnad alone, this facility would go along way to allow children affected and their families seek some respite at home. Particularily important as the more severely affected children are unable to holiday abroad due to their severe symptoms.

Between 6-8% of The Irish Population have a Rare Disease, thats about 360,000 , 275000 are kids. 

For more information or to offer your support please email, buzz@beeforbattens.org

We urge anyone affected with rare disease to lobby their local councillors and TD's to ensure that this facility goes ahead.

Comments on this Article

  1.  
    Teresa Noonan 29/03/2013

    I would just like to say a big thank you to the Heffernan family for giving so so much to this project despite having to cope with so so much in their own family. This goes beyond bravery. Another rare condition is Mitochondrial Disease which is on the increase in Ireland but again, like all other rare diseases, people and doctors alike have never heard of it. This condition, like Battens, can be life limiting or terminal. I am delighted to see that there is going to be a respite center in the south of Ireland that might alleviate the respite problem for parents with really ill children. The Government should be on their hands and knees thanking and assisting the likes of Tony Heffernan for taking on such a project that should be part of the HSE remit anyway. There should be no road blocks in this mans way or that of his organization in pushing this project through. Thank you so much for your generosity of spirit.

  2.  
    Ollie Gilsenan 26/03/2013

    Hi just seen tv and im a painting and maintenance contractor I am willing to do any labour needed and have some very good contacts.... heres to you guys well done already. Keep up the good work.

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    Catherine 06/10/2011

    I'm a children's nurse in the Munster Area. I see the great need for respite care in the Cork/Kerry Region. I would love to get involved in fundraising for this cause. In future, I would love to do voluntary nursing hours at the lodge.

  6.  
    Eva O'Callaghan 09/09/2011

    Saw the Late Late Show last week. Our little girl is one of six kids in Ireland and 170 worldwide (known cases) with a condition called Mowat Wilson. Its only been named with 12 years. Most doctors and consultants have never hear of it. There are no support organisations. We would love to get involved in anyway we can to help.

  7.  
    Claire 02/09/2011

    Hi I just want to say that the Heffernan family are an inspiration to everyone. Our daughter was diagnosed with an extremely rare genetic disorder last August 2010 at 5 months. She is one of 4 diagnosed in Ireland in 20 years and the youngest so our little lady is a learning curve for everyone. Her condition is CSID. Congenital Sucrase Isomaltase Deficiency. She is unable to digest sucrose and has only a partial tolerance to starch and carbohydrate. She reacts to most starch and carbohydrate. Her diet is affected on a daily basis as 95 percent of normal food has hidden natural sugar and starch/ carbohydrate is in so much of our stable diet. She has breathing issues and for the first 12 months we were advised to keep her at home as she was so open to infection. Her immune system is very weak due to her not being able to eat good foods so to speak. She also suffers from asmtha and is on inhalers constantly to prevent an attack. Last winter she got broncholitis and she was high risk all winter for infections. She has reflux and is on daily medication for that. She is on a medicated high energy formula since she was 7 months old to help her make up for what she can't get from food. Before she was put on the high energy formula she was in the words of her dietician looking like a malnourished baby. She wasn't gaining weight and was very low on the centile chart. Since she was 3 months old she will only take her formula from me and only when she is asleep. This is a nightmare as it could take hours to feed her. The high energy formula causes her severe constipation and she is on a daily laxative to help with this. Her consultant in Mullingar has said only for the amount of attention she has received at home she would be in hospital indefinitely. Her condition is not life threatening once diagnosed but can cause colon cancer in later life along with other complications if undiagnosed. If she is given sugar she can have reactions for days cramps, screaming, diarhoea, sleeplessness, unsettled, etc. Simple antibotics we have to be so careful with. She has astounded her consultants with how good she is at the moment and her progress to date. She is walking for the past week which we never thought we would see. She attends physio for her legs as her legs are very week from not being able to retain and build carbs when she was younger. I was almost crying when I heard of the org for rare diseases in Ireland. It has been so hard with so little support. People just have not heard of what our little girl has. Apparently there are only approx 1150 cases world wide. I would be so happy to get more information about your organisation and the support for families with kids with rare diseases. Keep up the good work. I always say the kids have no one to fight for them so us the parents have to. It's their basic right to a normal life that we have to help them achieve.

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