I thought Id take some time to explain why I volunteer for chILD UK & Ireland. In March 2010 my daughter (then 22months old) became ill. She fell asleep eating her dinner which was unusual for her. The days following she was lethargic and developed a cough. She also developed a grunt. I presumed she was just tired from coughing and that sleeping was her body healing. My mother told me to take her to the doctors due to the grunt. The doctors sent us to hospital and upon arrival, once the doctors had seen and heard ruby they hit the alarms and started to work on her. Ruby-Maes oxygen levels were low, she was grunting as was trying to get air in. She was admitted to HDU on the childrens ward. Ruby-Mae stopped eating for a few weeks her weight plummeted and they fed her via an NG Tube and gave her fluids by drip. There seemed to be no future in sight as she just was not responding well to anything. I can honestly say I have never been so scared in all my life. The next few weeks and months blurred together. It was a reoccurring cycle of going home for a few days to be readmitted, We spent Easter, her birthday and Christmas in hospital. She caught pneumonia, Rotavirus, and they suspect her condition was caused by Adenovirus although its now to late to check for this. She had x rays constantly to check the condition of her lungs, which always showed the same thing. She also was put on a dairy free diet for a while. In August 2010 we visited the John Radcliffe hospital where the consultant said that he suspected Bronchiolitis Obliterans and to go home and google it. When you google it this comes up - en.wikipedia.org/wiki/Bronchiolitis_obliterans. I was beside myself with worry after googling that. In 2011 as she was still in and out of hospital they decided to CT Scan her and this showed Ruby-Mae hadbronchiolitis obliterans and mild bronchiectasis. In 2010 I was searching for a sling to wear my newborn son as the hospital ward was too small to keep my son next to us while he was asleep. I typed up a message asking for a sling/ baby carrier as my daughter was in hospital with a suspected rare lung disease, when a message popped up from Alison Campbell to say her daughter had a rare lung disease and could she ask what my daughter had. I typed it back and it became apparent that her child had the same. I can only describe it as fate leading us to each other as I had never used a sling site before this and probably wouldnt have. Alison got me in touch with a few others at the ChILD Lung Foundation. The support they have given has been fab both mentally and physically. They donated a mobility buggy for Ruby which she uses on days out with us and they also donated an oximeter which is that little bit of reassurance that you cant put a price on. We have been to all three of the chILD Lung foundations retreats and its so amazing to see all the families and the children together. Ive been volunteering for a few years now to raise awareness and much needed funds. I have included some photos of our journey. Two are Ruby-Mae in hospital. One is the volunteers at the ChILD Lung Foundation, Carlee, Alison and myself. There are also two from a sponsored bike ride my husband did this year. One photo shows my husband, Ruby and Myself, the other is another family from Reading with myself and Ruby-Mae whose daughter also suffers from chILD. I have also included a recent photo of Ruby and I. If your still awake after reading the above Id just like to say a massive thank you for your support in donating, bidding, and sharing the page and auction items. I really could not do it without everyones support.
Posted on: Tue, 07 Oct 2014 09:01:31 +0000
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