Two Irish children who suffer from the rare and fatal brain disease Batten’s disease are still waiting for word on the possible treatment available to them in New York as the two children’s conditions continue to degenerate.
Their parents are devastated as their son Liam, aged two, is starting to show symptoms of the this vicious brain disease. Neither Liam nor Saoirse (5) will see their tenth birthdays unless they receive an experimental treatment available in New York.
Their father Tony, told the Evening Herald “Saoirse is not too good. She's improved compared to the last two weeks but she's now blind and she can hardly speak anymore.
"We're just modifying her medication which will hopefully bring back some speech."
"Liam unfortunately has also started having seizures which is a year and a half earlier than is usual, and he has about 40 seizures a day."
This June Saoirse underwent tests in New York to see if she would be a viable candidate for a stem cell surgery. If she is not accepted she will not survive. It was hoped that if Saoirse is accepted to the experimental program and her surgery is successful then her little brother might have the same surgery at some stage in the future.
Battens disease is a rare, genetic, degenerative neurological disorder that usually becomes fatal in children by the age of eight to 12.
Tony said “We're anxious at the moment about time, and we've been phoning America and they will inform us, and all of the other families are still waiting as well so we're all the same.”
"We've kept her at home because it's the best place for her. Hospitals are not a great place for her in case she picks up something. They're only good when she's really sick."
The two children are now so ill that they require round the clock care. He said “Saoirse is still a loving girl, having fun, smiling and enjoying life with a little bit of tomfoolery. And Liam is a great young fellow -- we just need to watch them…We're still waiting on the HSE to supply us with nurses. Saoirse always needed 24-hour supervision.", and myself and Mary have been doing it in turns, but now we need nursing care as well."
So far the family and their friends have managed to raise $521,000 to pay for Soairse’s treatment. However, if Liam is accepted they will need over $1.2 million to pay for the treatment alone.
Donations can be made to Allied Irish Bank, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to www.beeforbattens.org.