Eirin O’Connor will celebrate her fourth birthday on April 19 this year. But because she suffers from an extremely rare chromosomal disorder, the three-year-old Mullingar girl has never walked or talked. Her family are now launching a fundraising drive to raise €30,000 for her to travel to the Dominican Republic for brain stem cell treatment.
Eirin suffers from a combination of grand mal epilepsy, hypotonia in her muscles, and a rare chromosome disorder.
“Eirin has a balance translocation of chromosomes 6 and 9, and is the first person in the world to have 250,000 extra abnormal DNA on her chromosome,” explains her mother Lydia.
“I don’t care if she never walks. I would just love for her to be able to communicate. The only thing that upsets me is when she is crying and is frustrated and can’t tell me what’s wrong; if she could even just say ‘belly sore’ or ‘want bottle’. Of course if she did walk that would be brilliant.
“But she gets very frustrated; she understands everything we are saying to her but she can’t communicate with us. She loves when we play music for her.”
Eirin has now gone 80 days without a seizure, the longest she has been seizure-free. She is currently taking four different types of medication in the morning and four in the evening, the most medication she has ever been on, which doctors are hoping will keep the seizures under control.
It is the opportune time for Eirin to travel to the Dominican Republic to avail of brain stem cell treatment, scheduled for April 26 this year.
“They want Eirin to travel as soon as possible while her brain is at rest. In the past she would have had up to 15 seizures per day and up to four at night. We are pleading for help from the public. We have to raise a minimum of €30,000, and if she needs a second treatment it will be €7,000,” says Lydia.
A Monster Raffle is to be held in early April to help fund Eirin’s trip. Some of the prizes include a week’s holiday in a luxury villa in Turkey, weekend breaks, and much more.
“No matter what happens, Eirin’s mum and dad are very proud of her. She has proved the doctors wrong and she is a fighter,” says Lydia.
If anyone would like to know more about little Eirin, you can visit www.friendsofeirin.webs.com, where a blog will be regularly updated on her progress.
For more information on fundraising please email [email protected].
A bank account has also been set up for anyone who would like to make a donation to Eirin’s cause. Any donations, large or small, will be much appreciated.
Bank: Permanent TSB Mullingar branch
Acc name: Friends of Eirin
Acc No: 14546456
Sort code: 99-07-33