On the day that young Liam Heffernan should have been celebrating his 6th birthday with is mom and dad on the Dingle Peninsula, his father Tony Heffernan, will be assisting with the launch of Ireland’s First Rare Disease Plan which is being formally unveiled by Minister for Health James Reilly today in Dublin (June 3rd 2014).
Mr. Heffernan, a key member of the National Rare Disease Task Force, has also been, in a voluntary capacity, the National Patient Representative for Rare Disease for in on the Ministers for Health’s Steering Group, is relieved that finally the 1st National Plan has been published.
Speaking ahead of the launch, Mr. Heffernan stated:
“This is a bitter sweet day, while I am glad the plan is finally published, it has been a long road but I hope the effort undertaken to get this first plan across the line has not been in vain and that this document does not become a dust collector. However should now be seen as a fresh start for those affected by rare disease here in Ireland, and it is the government responsibility to ensure that the plan is implemented effectively and the HSE provided the resources needed to replicate the good progress made in many other fellow European States.”
The National Plan, and 5 year implementation Strategy,is the result of an EU requirement, has been under development for in excess of 2 years under the supervision of the Dept. of Health.
Mr Heffernan added: “while it is important that the nation will now have a policy & a plan on rare disease, there must be an increased effort by the government to ensure that health system can provide appropriate care, support and understanding to those affected. A policy is only as good as the result it produces; I will personally monitor measure and report on the effective rollout of the plan by the national stakeholders responsible for its implementation.”
Tony and Mary Heffernan have had their lives & family ripped apart by rare disease. They understand first-hand the difficulties associated with the health system, the frustration of dealing of misdiagnosis, lack of compassionion & understanding the strain of looking after two highly dependent children with a rare life limiting condition. Both of their children, Saoirse and Liam were born with Batten Disease, a neurological condition. Liam Heffernan passed away just two months ago, on May 4th 2014, at the family home in Kerry and the tender age of 5 years, his big sister Saoirse sadly passed away in 2011, also aged 5.
Early symptoms of Batten disease usually appear in childhood when parents or doctors may notice a child begin to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behaviour changes, delayed speech, slow learning, clumsiness or stumbling. Over time, affected children suffer mental impairment, worsening seizures, dementia and progressive loss of sight and motor skills. Children become totally disabled and eventually die.
Immediately following the launch of the plan, Tony shall return home to the Dingle penisula to join his wife Mary to lay a bouquet of fresh flowers and a dinosaur toy on the grave of the couples recently deceased son Liam and sister Saoirse.
The Heffernan’s, and their charity, The Saoirse Foundation, recently lodged a planning application with Kerry County Council to construct a state of the art and new National Children’s Respite & Hospice Centre in Kerry.
Named after their son,Liams Lodge will be located on a 10 acre green field site in Blennerville, Tralee, Co. Kerry. As well as being Ireland’s first NATIONAL respite Centre for children suffering from genetic and rare disorders, Liam’s Lodge will also be Irelands 2nd Children’s hospice predominately serving Munster and the Mid-West.
The charity has partnered with Trinity College and University College Dublin as well as the third level institutions in Munster to develop and deliver the accredited on-site training, for medical students, care professionals in the field of Rare disease. The on-site training facility will also provide training to families and care providers as well as continued professional training to nurses, doctors and other medical professionals.
Thousands of parents from every community in Ireland, like the Heffernan’s, face similar challenges from the wide range symptoms of genetic and rare disorders, some of which are severely debilitating & also, in many cases life-limiting. As the Heffernan’s know first-hand, the value of a respite break is priceless & vital to recharging the batteries, while giving the whole family some time together in a relaxed and safe environment that understands their situation, providing support and understanding the needs of those affected.
The charity is actively seeking support from trade professionals & contractors to get involved with the developing Liams Lodge. Whether it is a box of screws, steel, timber, roofing , insulation, windows etc.. or any building materials which you can provide, we would love to hear from you. We are asking businesses, builders suppliers, tradespeople and anyone else who wishes to be a part of Liams Lodge to donate time, equipment, services and funds to help us build this badly needed facility.
The public can pledge your support today by texting DINO to 50300 to make a €4 donation.
Ends: for more information call 083 00 44 444 0r email firstname.lastname@example.org