Hazel 'Anne' Robinson
Drumlish, born Dublin. Lived in Wicklow, Bray 'Greystones. Moved around a few places before settling for in Longford with family. Spoke of many friends she had met on the way, and through social media, has caught up with a lot of them. Gave her great experiences and many friendships having lived in several places, she will always cherish and many friendships. 'I would call Longford home, because its the longest i have stayed anywhere'. Mother Hillary 'Anne' Robinson, from Offaly originally. And many will know Hillary for Hungry Horse Outside, what started, with people leaving a few animals on land they had to a fully recognised Charity. Grandparents, Paddy Robinson, whom is nearly 94 years of age. Anniscoffee, Milltown Pass West Meath. Paddys late wife was Philomena 'Monica' Robinson. Hazels siblings, one brother Adam and two sisters Mandy and Rachel. Hazel left schooling early to start a carer in Hair dressing. In Wavelenghts in Mullingar, used to be over Shaws if its still there. When she had her first child Gypsie, she became a full time mum and carer. 'I was young mother, didn't know much about it, but here i was with Gypsie. Soon in her early life discover she had Cystic fibrosis. I didn't know what is was, but within a short time, i was not only a mother but also nearly a nurse. With gypsies condition's there where many things i had to watch out for. It was after 3 days when they noticed something, and after being sent to Crumlin Hospital. We where there for a month and half before they knew what it was exactly. I was taught how to do physio, and how to work a NG tube, a feeding tube system that would send food through nose to stomach. Also nebuliser, and very dangerous, if Gypise got an affection of any kind. Having a lower immune system. I had to watch out for any affection and the earlier the better, could mean life or death. I was young, I was training one minute, next thing I was a mother. Poor Gypsie was sick, I would see other young couples with their kids, pushing around prams. I had to learn to almost be nurse overnight. At 17/18 was a big responsibility. Gyspie 14 years old, now, and i hadn't much outside help and 14 years on still don't. In the early years, she could be in hospital for 2 weeks and out for 3 months. I rem hearing when i was young, that if you ever looked in the eyes of a dolphin, you would never see the world the same way again. When she was in the incubator o promised i would bring her to Disney. When she eight years old, it was a dream come true for her when I brought her there. The illness is a continually deterioration as time goes by, more hospital time more tablets. I remember my mother saying to me once, 'If you look hard enough, you will all ways find something good a silver lining'. Its true, when we get any free time, we use that, when you have life , you grab it, doing things you enjoy. The beauty of the world, simple things, you wouldn't normal see, but when life is lived by day, you enjoy, Wicklow mountains, appreciate it more than others. I be honest if it wasn't for this illness I would probably be a narrow minded person. We went to Iceland awhile ago, any chance we get we use it. Been to Paris, Prague, Austria, Budapest, whale spotting. That was a great experience i will always cherish, my sister came too Rachel. Gpysie had booked the whale hunting sightseeing tour, we realised when we got the place were staying in, it was 550 kilometers away . I asked gypise, well what you think, do you wanna get up and go chasing whales. Yes, she said. We left the place we were staying in and traveled. Route one i think it was, on the wrong side of the road on the wrong side of the car for me, was so alien to what i am used to. It was the most beautiful scenery i had ever seen all the way. And rachel had one of my favorites story on cd, under the hawthorn tree, we listened to that and songs. We just got there before the boast was going. On the way back it was kind of scary the dark, the black ice, after a time we pulled in. So eerie, Iceland is so quiet, not a huge population When we stopped to get a few minutes break, looked up to sky ad there was the aurora borealis . I never forget my own first trip away, to america Chicago. My mother seen in me i needed a break, and herself an partner mick got me ticked to america. You either sink or swim they said, your going. There i was on my own first time out of Ireland. Just got off plane, heading into city, all the housed where small, i was thinking this cant be right. Not like the films i thought. The train went underground, and i think i jumped off as top early, but left train went up steps into city, and was like wow. Al the skyscraper,s i was scared and excited at same time. I didn't know what to do , where was i going, i stopped a person ans asked where is the nearest Irish pub. I didn't understand what person said to me, north south east west, five blocks, i just walked and found one eventually. And between there and sight seeing, i spent most of my days. People love the Irish there, i dint have to buy any drinks, i was singing karaoke all the time having great crack. Got a spin on a Harley Davidson, someone side a museum up the road there thats free in, so i went there, there i was standing look at self portrait of Vincent Van Gogh. Life Its so unpredictable, you cannot plan anything, you don't know when you get a window to do anything, just do things on the spur of the moment. There is so much bad out there politics, but the good outweigh the bad. Small gestures, that mean so much. Like Pj Bodhranjo that took time out of his life and wrote a song for Gypsie. Not long ago, I was picking up a lady from a hotel in Dublin, an infamous character from goggle-box in UK TV, Sandra, on the way into City we were thinking of heading to the Apollo house, as she was on way to see gypsie. I have to pinch myself, like, here i am picking up a TV personality in Dublin airport. Many moments like that, teach you that Life has many twists and turns that surprise you.
All of gypsies life i have been praying for a miracle, for a cure, for gypsies cystic fibrosis. And five years ago , all our prayers were answered when we heard of a new drug was in development. Would covered 80 percent of sufferers. We waited and waited and waited when it eventually came to market, it was a devastating, and a huge blow to cystic fibrosis sufferer, it was like a carrot dangling in front of you, it was there on a shelf, but cant have it because of an huge value that was out on it bu vertex.
credit to the journal.ie for background on Orkambi story and information '' is a medicine for cystic fibrosis treatment. Orkambi it has been said has transformed the lives of cystic fibrosis sufferers. Around 550 people are in need of such treatment, the HSE have so far not supported the drug, because of its high cost. They have had meetings with Vertex the makers to try and get a reasonable price. So far its still not been supported by government. To the dismay of sufferers and family's of those involved. In Ireland there is a high rate of the disease, in comparison to head of population, the highest in the world, and even the most sever cases of cystic fibrosis , over 1200 sufferers. It only makes sense to support he drug, as it stands it is 160 thousand a year for one patients, a exhortation cost, that set up by the company that makes it, and has kept the details private and all rights to patents, so no generic version can be made. At the same time, even at that price, the benefits the government would save, via other other expensive drugs, hospital visits, needing transplants. ''
On a lighter note, I rem once. 3 years ago, it was a hot hot summer, everybody in the hospital, was irritant mood. Gypsie asked me for an ice cream, but i couldn't take her out. I had seen a comp on Facebook, i made a comment under, where they were asking, why do es you company deserve to get ice cream. I spoke about the nurses doctors patients, all deserved it at Crumlin children's hospital. They sent over an ice cream van, and i brought down gypsie to it, and gypsie 'got into van and served out over 200 hundred ice creams to doctors nurses patients who came down in wheel chairs, any means necessary. I said to Gypsie, your lucky you have me as a mother, if i cant bring you out t get ice cream, i can bring it to you. I also bought a caravan , out of the respite monies, so the whole family could be closer. See it for sale in Tullamore, went bought it. Took family in it to Clondalkin Dublin. A caravan park, and when Gypsie was allowed out we went to parks walks, etc, but just to have family closer as i have two other beautiful children also. Also may I add Gypies is such a great yo lady, she also donated hair to Charity.''
I asked Hazel, with her experience of life what would be her advice to people.
'' Id there is something your passionate about something, keep doing it doing it regardless of what any body says, even when people are sick of it, keep going. people know whats right and wrong. , don't let anybody say anything against you. You believe in something fight for it. Also i find it very frustrating if you see something totally unjust i cant see why people turn a blind eye to it.
Nobody knows whats around the corner if it deosn't people they don't want to know. But in a second your whole life can change you never know what may happen in life. My biggest inspiration in life is off course my mother. She has never not being working, a single mother, Rachel my sister had cerebral palsy, i used to help look after her when i was young. But for sure i get my drive from her
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