Stem cell hope

By TOMâ€Ë†GILMOREâ€Ë†ANS SIOBHÃÂN HOLLIMAN LAST year three people from North Galway travelled thousands of miles in the hope of receiving treatment that would help restore or improve their sight. The patients varied in age and medical histories but all three received tremendous support from their local communities, friends and relatives in fundraising the thousands of euro needed to enable them to travel and receive stem cell treatment. Stem cell treatment remains controversial and there is considerable sceptism about its results. It's referred to as a wonder treatment because stem cells have the ability to reproduce themselves. Stem cell therapy involves inducing stem cells to turn into healthy new tissue to replace failing tissue. Adult stem cells, which are sourced from bone marrow or the umbillical cord, have the ability to repair and regenerate damaged cells and tissues and there is a possibility that they could significantly improve a person's sight. All three patients - Valerie Dolan from Abbeyknockmoy, Amelia Filipczak from Tuam and Saoirse Connolly from Caherlistrane travelled to the Beike Treatment Centre in the Qingdao Chengyang People's Hospital on the east coast of China, which specialises in stem cell treatments. This hospital uses adult stem cells, which are different from the highly controversial embryonic stem cells, which are sourced from human embryos. Having spoken to all three patients before they embarked on their journeys, The Tuam Herald hears of their experiences a few months after they returned and what improvements, if any, they have found in their conditions. AMELIA FILIPCZAK Small but hopeful signs of improvement AS she approaches her second birthday, little Amelia Filipczak from Tuam is showing some small signs of improvement following groundbreaking stem cell treatment in China. Her Polish-born parents Justyna and Lukasz, who have been living and working in Tuam for almost five years, say they hope that this will continue. But they are also acutely aware that they may have to take their only child back to China for further treatment. The family live at Cricket Fields, and Amelia is suffering from hypotonia and optic nerve hypoplasia (ONH). Her muscle tone is very low and as her deep reflexes are poor, this has been preventing her from walking on her own. The only hope of her getting sight, and the ability to walk, was by having the costly stem-cell transplants carried out in the Beike medical facility in Qingdao, China. Now they are waiting for further signs of improvement. 'She is responding a bit more to light at present and she is able to hold her head up a bit more than before. Amelia is also trying to lift her body via her elbows. She is able to hold her bottle while drinking milk or juice, and these little things, point towards an improvement. 'We are hoping that there will be much more later on. They told us in China that we will have to wait about six months or even more to see improvements,' says Lukasz. His wife, Justyna is more enthusiastic about the improvements and she jokes when she says that men tend to be more impatient, expecting instant results. 'The medical people in China advised us to believe, to be patient and wait for results because they will come. While it works slowly, it does work and it should be worth the wait.' She says they met couples that had come back two, three and even five times with their children for the treatment. 'We still believe that it will work because the first seven years in a child's life are the best for the vision to develop. The vision stops developing after that so all we have to do for Amelia we have to do over the next five years. That is why we are so focused on helping her now,' she added. The mother and her little child have now gone back to Poland for specialised physiotherapy in a hospital there. 'Amelia will have intensive physiotherapy there for several hours every day for four to six weeks. It's tough as the hospital is 350 kilometres from our home area in Poland but we have to do it for her. 'On this trip it is just Amelia and myself as Lukasz stays on in Tuam to work,' she added. 'Since we came back from China I can see that Amelia is much stronger than before, she is able to sit on her own a little longer than before. 'Our physiotherapist in Tuam notices that she is sitting straighter and she seems to be looking around a bit more. When we put on the TV she seems to be looking at the cartoons and while we don't know exactly what she can see there seems to be a reaction and she lifts her head up when colourful lights come on the TV screen,' says Justyna. Lukasz says that while he accepts that it is more 'in the nature of men' to expect instant results he is still very happy that there is a bit of an improvement in her condition. 'Something has happened and hopefully it will continue. Of course if we have to go back again we will do so if it helps her a bit more. 'We want to thanks all the people who were involved in the fundraising committee and the people who gave us the money in order to make the trip,' he added. 'People gave so generously to our fund and many also gave us good words of advice. We feel that so many people have been really behind us in what we are doing. They really care and it's very important for us that we are not alone in dealing with our problem,' says Justyna. The couple say that the Irish and Polish people around Galway, and in other areas, have been most supportive of them. 'After the photos first appeared in the paper people were stopping me on the roads and the footpaths and asking for Amelia. They were willing to help with the fundraising even though we did not know who they were,' says Lukasz. Justyna added that they also got good advice from an Australian couple that were at the hospital in China with their nine-year-old girl who also has eyesight and other problems. They say that the bravery of the Australian couple has been another inspiration for them. VALERIE DOLAN A solo vote for the first time LESS than two years ago, 24-year-old Valerie Dolan could only taste the difference between beans and peas, now she knows exactly what's on her plate without first having to taste. Seven years ago, Valerie lost her vision pretty much overnight and she was diagnosed with Bilateral Optic Neuritis and subsequently Optic Nerve Atrophy (ONA). Left with just 20 per cent vision, she and her family tried everything and every specialist. Despite lengthy periods of steroid treatment, vitamin supplements, hyperbaric chamber sesssions and every alternative therapy imaginable from acupuncture to iodine baths, Valerie's sight never changed or improved. But her tenacity wouldn't allow her to give up and she researched how cutting-edge stem cell therapy available in China might offer hope. After an overwhelmingly supported fundraising campaign, Valerie began her brave journey to China in January 2010 where she underwent seven weeks of intensive treatment. 'I started to notice an improvement from about three weeks. It happened very quickly. 'It was little things at the beginning. I was seeing the colour red and I realised that I noticed steam while I was doing my hair,' she explains. The stem cell therapy wasn't a miracle drug. Valerie didn't recover her sight overnight, as she had lost it, but things were becoming clearer. 'Every day I would look out from my hospital window and I began to notice something on a wall. I told Matthew (her boyfriend) and every day he'd make me look at it again and draw what I saw. Eventually it turned out to be a red dragon and Matthew brought me over to see it closer up and I realised that I had been able to see it from a distance.' Valerie's sight was tested regularly while she was in the Chinese hospital and by the time she left she had gained a metre and a half in sight. By last summer Valerie was delighted that her sight had improved by four metres. 'I have an overall picture of things and can see people coming towards me,' Valerie explains. Before the treatment the world she saw was a fuzzy jigsaw with bits missing, nothing was clear or recognisable. It's not just peas and beans that Valerie can distinguish between, she now enjoys looking at green grass and can see a tree from her kitchen window. Valerie was so impressed by the results of the treatment that she decided to make a return trip last November. 'I was very fortunate that there were still funds available to allow me go a second time,' she pointed out. Valerie spent another three weeks in China and this time received six injections, one of which was directly into her eye. 'It wasn't the most pleasant experience,' she says with a little laugh, 'I was awake for it.' She came home on December 8 and was told to wait another six to nine months and see if she noticed any further improvements. 'I was getting worried because I hadn't really noticed any difference for a while after I came back and it had only taken a few weeks to see a change the first time round.' During a trip to Loughrea lake, Valerie realised she could see the water buoy in the distance. It might not be the most spectacular object to witness but for Valerie it was like a wonder of the world. 'I also voted by myself in the recent elections, something I was never able to do before,' remarks a delighted Valerie. Seven years ago Valerie was devastated when she had to accept her lack of sight meant she had to give up her dream of becoming a beauty therapist. Now, after the stem cell treatment, she is both anxious and excited about going to college in September. 'I am worried a bit about whether or not I can see enough to be able to do it but I'm delighted I have the confidence to even consider it and everyone there has been very supportive,' she adds. Valerie has always been realistic about what the China trip might and not bring. 'I know it doesn't work for some people and I have met some of them while I was there. I don't know why I lost my sight and I don't why the treatment seems to have worked for me. I was contacted through my blog by lots of people who had similar conditions and I know so many people who are hoping to go,' she said. 'I'm definitely glad I went. I'm going to give myself plenty of time and hopefully I'll be able to be fitted with glasses sometime down the line.' SAOIRSE CONNOLLY Significant improvement to teenager's sight MEANWHILE Helen Connolly says they are overjoyed with the improvement to her daughter's Saoirse's sight since she got the stem cell treatment in China. 'We were worried and nervous going out as we did not know what lay ahead. But it was a life changing experience for Saoirse and for us who have seen the joy in her eyes when her vision began to improve,' says Helen. Saoirse, from Caherlistrane, was diagnosed with bilateral optic nerve hypoplasia when she was four years old and her family were told that there was no cure for her condition. During her childhood, Saoirse struggled with everyday tasks, which most take for granted. She attended Castlehackett National School and more recently the Presentation College secondary school Tuam where she was supported by a special needs assistant and teaching aids. In searching for more information on her condition, Saoirse's family read about the Beike medical facility in China. After doing some research, Saoirse arrived there in June 2010. 'She received eight treatments of stem cells over six weeks. She returned in July and the improvement to her vision was visible in the early stages.  Over the following six months the improvement increased. During this period she also attended weekly acupuncture sessions,' says her mother. Saoirse is now 14 years old and in second year at the Presentation College, Tuam. 'Since returning she has gained light in her left eye, which she didn't have previously, and her lens strength in her glasses on her right eye has been reduced three times due to vision improvement. 'This improvement in Saoirse's vision has been life changing and has greatly improved her quality of life.  She no longer relies on a full time resource teacher and needs fewer teaching aids,' says Helen. A number of fundraising events took place to help fund Saoirse's treatment in China. The committee and her family say they want to sincerely thank all those who attended the events and for the very generous donations made to her fund. 'Without all this it would not have been possible for Saoirse to have received such a gift of improved eyesight,' concluded Helen.