Dominican clinic may give Eirin a normal life

Three-year-old Eirin O"Connor-Nolan may have a chance at a normal life despite being diagnosed with a condition never before recorded anywhere in the world, her mother Lydia told the Westmeath Examiner.Eirin, who lives in Mullingar, has spent a large portion of her life in hospital and has suffered from seizures, breathing problems and developmental difficulties from birth.At almost four years of age she cant, walk, talk or crawl; despite making valiant efforts as a strong willed young girl.Eirin"s condition is so unusual that it baffled experts and necessitated her hospitalisation for almost the entire first year of her life. While still unnamed, Eirin"s medical problem relates to a previously undiscovered chromosome disorder.Her mother Lydia now believes stem cell treatment may offer the only chance to improve her quality of life.However, the treatment isn"t cheap and Lydia is asking for the public"s support over the coming weeks to help pay for the treatment which might offer Eirin some hope.The stem cell treatment is due carried out at a special clinic in the Dominican Republic but Eirin"s parents will need to come up with €30,000 before the potentially life changing treatment can take place.Friends and family have already managed to collect €7,000 through fundraising and they are hoping to collect more money in the coming weeks through a number of charity events.Eirin"s procedure has been booked for April 26, seven days after her fourth birthday. Her mother is hoping to raise the outstanding €23,000 before that time.Lydia remains confident her daughter will be helped by the treatment. 'Eirin was born on the 19th of April 2005. We knew she was sick straight away because her blood sugar levels were dropping. She wasn"t breathing like a child of full term, but she was full term. She was in intensive care for a week,' she explains.'When we were home she started having epileptic fits in the car seat, I had never seen an epileptic fit before. My friend said to me "she"s having a seizure", and I said "no she"s not".'However, after visiting the hospital on a couple of occasions, Lydia realised there was something seriously wrong.'Eirin basically lived in Mullingar for a year, and I lived with her and her father. It was very tough. She used to have up to 15 seizures a day, they"d last maybe 20, 30 seconds.So we slept in Mullingar Hospital with her for about a year. Then she was transferred to Temple Street. Her seizures were getting out of hand and the medication couldn"t control it.'Doctors at Temple Street in Dublin carried out a series of tests but struggled to find anything. 'They did MRI"s, EEG"s and all that and then they found out that there was an abnormality in the brain. Then they did chromosome disorder tests on her, they checked her for downs syndrome, tourrettes syndrome, angelman syndrome, all of the syndromes but they came back negative,' said Lydia.Eventually they discovered her chromosome disorder. 'What came back is that she has an abnormality in chromosomes six and nine. It"s called a balance translocation between the chromosomes six and nine. They didn"t know whether that was significant or not. Eirin continued to have seizures in Temple Street. I stayed in hospital with her.'Medication finally led to Eirin"s seizures abating. 'She got out of the hospital because her seizures came under control. For a year she was mostly in hospital then out of hospital, we basically lived between Temple Street and Mullingar for a year.'Back at home the true impact of the condition became apparent. 'Then we noticed she couldn"t go on her belly and lift her head, she had no speech. Then as the years went on, she cant walk, she cant talk, she cant crawl,' Lydia said.The litany of tests eventually revealed the unexpected. 'Then we found out she is the first ever in the world. The left side of her brain is abnormal. She is the first ever child in the world, there is no name for it yet. The doctor joked and said that we might name it after her, Eirin Syndrome, because she is the first ever. The long arm of her chromosome one has 250,000 extra abnormal DNA.''She is severely delayed, she is four next month, she cant walk, she cant talk but she is a happy child. Her seizures are ok now, she hadn"t had any for 83 days, then she had three one of the nights, then she had three two weeks later, which is very good for her because she"d had them every night before the 83 days break,' commented Lydia.Now somewhat stabilised, Eirin is living a good life with plenty of love and assistance.'She"s in school in Lir out in the Delvin Road. They are brilliant out there, Dr. Shariff is her consultant, she"s amazing, I"d be lost without her,' she said.A chance meeting between two women in a shop at Palmerstown in Dublin led to some hope for Eirin. Eirin"s aunt and another child"s grandmother got talking about the children and the issue of stem cell treatment arose.When Lydia found out she investigated further and contacted the clinic in the Dominican Republic. 'I rang America and they were willing to take her on,' she said. On speaking to the doctor, she was reassured. 'He reckons she will be a brilliant candidate. They inject stem cells into the stem of the brain. The healthy stem cells they go to the damaged ones and they rejuvenate them,' he told her.Although her development has been stifled by the condition, Lydia takes great joy in her daughter"s progression. 'She"s grand, she"s able to sit up on her own now and she"s bumming around the floor backwards, so that"s really, really big for her, it"s great, we were crying when we saw her doing that,' she said.'Now she has learned to give mammy and everybody a hug. For years I would have loved for her to hug me back, for her to hug me back one day I roared crying, I thought it was just brilliant, it was the happiest day ever. She rubs the back of your neck and just squeezes you,' explained lydia.Lydia believes now is the ideal time for Eirin to travel. 'The seizures have calmed down, that"s why they want her over because it will be more successful when her brain is at rest then when it is not at rest.'Although her condition is often debilitating, Eirin has a big heart. 'She is a happy little baby. Me and her daddy and all of her family are just trying to get her a better quality of life. That"s all we are hoping for.'Through her research, Lydia believes there are no side affects to the treatment. 'There"s no side affects to it. The worst that can happen is that it wont work, and that wont be the worst that can happen because we still love Eirin and she is still mine and still her daddy"s, and everybody else loves her and she still has her own personality, she great. At least we can say we tried to give her a better quality of life,' said Lydia.'Basically we are just issuing a plea to people to help out. I know times are hard now but any donations little or small, we would be very grateful,' added Lydia.Joined by a great team of friends, family and volunteers, Lydia has organised a number of fundraising events, including a motorbike drive from Mullingar to Galway. In the coming weeks she will be involved in a number of other fundraisers.A fundraising event will be held in Columb Barracks on April 11 and a Monster Raffle is due to take place in Clarke"s Bar in Patrick Street on April 12.More events will be held in Fowlers Bar in Ballyfermot, Dublin and Coffey"s Bar in Inchicore, Dublin. A Bag Packing fundraising drive was held in Supervalu in Mullingar on March 20.More information on Eirin can be found on-line at www.friendsofeirin.webs.com. A charity account has also been set up and any donations would be gratefully accepted. The account details are: The Mullingar branch of Permanent TSB, account name, Friends of Eirin, account number 14546456 and the sort code is 99-07-33