The Buzz Blog - News
The family of young 4 year old Monaghan girl Amelia Ryczan are over-joyed following the news from United States, that their only daughter has been offered a second chance & participation in a potentially life extending medical treatment trial for Batten’s Disease sufferers currently being run at the prestigious New York Weill Cornell Medical Centre.
The four year olds parents, Tamara and Damian, are overjoyed with the recent news and are hopeful that positive news from last minute blood tests currently been undertaken in Dundalk, will allow the young girl to depart Dublin Airport on Monday Feb. 20th. Amelia will be only the second Irish child to be participate in the treatment trial, however these past 10 months have been a rollercoaster for the family, as Amelia was previously refused in May 2011, due to an accelerated progression of the disorder, which has seen Amelia’s daily quality of life deteriorate rapidly. Since her return, her condition has stabilised and she is now considered strong enough for the procedure.
This parallel treatment trial, which uses a lower dose of the gene enzyme than that offered to previous participants, including that given to Kerry toddler Liam Heffernan, will see Amelia being scheduled to undergo surgery on Feb 28th. Saoirse Heffernan, from Kerry was the first child from Ireland to be screened for the treatment trial back in 2010, initially met the criteria for the treatment trial however subsequently deteriorated rapidly and sadly passed away in January of 2011.
Liam Heffernan, Saoirse’s younger brother, to date is the only non US citizen to participate in the trial, which involves the drilling of 6 holes in the child’s skull and administering of treatment to twelve locations within the brain. Liam’s surgery took place on May 3rd 2011. Since the surgery, Liam’s parents, Tony & Mary Heffernan, have seen a number of improvements in Liam’s well being, with noticeable improvements in his speech and general mobility.
Bee For Battens is supporting the costs of the entire trip for Amelia and her family and gratefully welcome support with these significant costs.
Click Here To DONATE