Jaymie's Physiotherapy Vest
Donation protected
I can't think of anything worse than learning your child has an incurable and debilitating illness. To know that your child will live a life much tougher than yours, that they will be starved of the many opportunities in life that you and I take for granted, and that they are likely to die within your lifetime, leaves you living each day with a crippling sadness …
Our precious baby girl Jaymie Rae, was born on the 15th August 2013. It was, like many parents will tell you, the happiest day of our lives. We didn’t have the simplest of pregnancies, labour, or post labour for that matter. We nearly lost Jaymie in labour, and Jaymie’s mummy Louise a few days later (who suffered with a massive infection), but after two long weeks in hospital, and one incredible week getting to know our baby girl at home, I (Jaymie's proud daddy) returned to work.
I can remember my first day back like it was yesterday. Everyone wanted to hear and see how Jaymie was doing. I proudly showed off my photos and shared our stories. It was 3 hours into my first shift back at work that the mood changed. I received a tearful call from Jaymie's mummy Louise that shook my world. Holding back the tears, I drove home right away. A nurse was on her way to our home, and she had upsetting news about our baby girl. When the nurse arrived, she gave us the news that tore our hearts into tiny pieces. Jaymie was suspected of having Cystic Fibrosis.
The next day Jaymie, Louise and I spent in hospital. All 5lbs 5oz of Jaymie’s delicate little body was prodded, pronged and assessed. Later that day her diagnoses was confirmed. We couldn’t move. Our lives changed forever.
We had no idea what cystic fibrosis was. If it doesn’t concern you, doesn’t affect you, if it’s never been a part of your life, then why would you?
Cystic fibrosis is a condition a person may get from their parents. The faulty gene is carried by over two million people in the UK, most of whom have no idea. If two carriers have children, there's a one in four chance their child will have the condition. Cystic Fibrosis causes a thick, sticky mucus to build up on your lungs, digestive system and other internal organs. It causes, in the main, breathing and digestive problems.
It is not contagious. There is no cure.
Jaymie is now nearly 2 years old. She is a super happy, incredibly bright and beautiful little girl (if you don’t believe me, check out the pictures I’ve posted!). She brings so much happiness to her proud mummy and daddy.
We have learnt to deal with Jaymie’s condition, and although there is no cure for Cystic Fibrosis, there are many treatments that can help maintain Jaymie’s health for as long as possible.
Our medicine cabinet is enormous! Jaymie needs antibiotics 4 times a day to help her fend off infections, a range of vitamins and supplements twice a day. Before each meal, Jaymie must be given creon (a pancreatic enzyme), as her pancreas doesn’t function properly, to help her digest her food. Inhalers must be administered to help her break down mucus and special milk formulas taken to help her gain and maintain weight.
We must also attend regular hospital appointments to meet with a team of Cystic Fibrosis specialists, nurses, physiotherapists and dieticians. We dread these appointments. With Cystic Fibrosis, you never know what to expect. A bad result from one of Jaymie’s cough swabs (which we send into the children’s hospital weekly), or a cloudy chest x-ray, and Jaymie could be in store for a lengthy hospital stay. The apprehension is pure torture.
Without these medicines, treatments and care, Jaymie would be unlikely to make her first day of school. It’s through research that these treatments are developed and improve all the time. With better treatments, comes a better and longer life for our daughter. With the proper treatment Jaymie has a chance of living into late 30’s. Research and better treatments may mean Jaymie and others with CF can live even longer.
In addition to all of the above regular treatments, Jaymie endures gruelling chest physiotherapy 2 to 3 times a day for 30 minutes a time.
Jaymie’s physiotherapy involves Mummy and Daddy holding her down in various positions whilst firmly patting her chest with a rubber percusser. Although slowly getting used to it, Jaymie (as you can probably imagine) really hates it. The tears stream down her little cheeks, and she kicks and screams for us to let her go. It’s heart breaking, but we fight to maintain her health and shift the thick sticky mucus that clogs her lungs.
Jaymie’s condition isn’t all bad. In a weird way, it had made us appreciate what we have, and the time we have together so much more. Time is precious, and it is with this in mind that we are desperately trying to raise money to purchase Jaymie a physiotherapy vest which will help her, and us with part of her daily fight against Cystic Fibrosis.
The vest will not replace Jaymie’s chest physio altogether, but it will give her greater independence, a little more freedom, and the chance to manage her condition as she grows older in a more comfortable and less interfering way. The cost of these vests are in the region of £10,000 and they are not funded on the NHS.
Since Jaymie’s diagnosis, we have experienced some incredible kindness from those we know, and even people we didn’t. We are very humbled by their incredible support. If you can, please extend this kindness and make a donation towards Jaymie’s vest (no matter how small) it really would mean the world to our little family.
Rob, Louise and our little superstar Jaymie xx
Our precious baby girl Jaymie Rae, was born on the 15th August 2013. It was, like many parents will tell you, the happiest day of our lives. We didn’t have the simplest of pregnancies, labour, or post labour for that matter. We nearly lost Jaymie in labour, and Jaymie’s mummy Louise a few days later (who suffered with a massive infection), but after two long weeks in hospital, and one incredible week getting to know our baby girl at home, I (Jaymie's proud daddy) returned to work.
I can remember my first day back like it was yesterday. Everyone wanted to hear and see how Jaymie was doing. I proudly showed off my photos and shared our stories. It was 3 hours into my first shift back at work that the mood changed. I received a tearful call from Jaymie's mummy Louise that shook my world. Holding back the tears, I drove home right away. A nurse was on her way to our home, and she had upsetting news about our baby girl. When the nurse arrived, she gave us the news that tore our hearts into tiny pieces. Jaymie was suspected of having Cystic Fibrosis.
The next day Jaymie, Louise and I spent in hospital. All 5lbs 5oz of Jaymie’s delicate little body was prodded, pronged and assessed. Later that day her diagnoses was confirmed. We couldn’t move. Our lives changed forever.
We had no idea what cystic fibrosis was. If it doesn’t concern you, doesn’t affect you, if it’s never been a part of your life, then why would you?
Cystic fibrosis is a condition a person may get from their parents. The faulty gene is carried by over two million people in the UK, most of whom have no idea. If two carriers have children, there's a one in four chance their child will have the condition. Cystic Fibrosis causes a thick, sticky mucus to build up on your lungs, digestive system and other internal organs. It causes, in the main, breathing and digestive problems.
It is not contagious. There is no cure.
Jaymie is now nearly 2 years old. She is a super happy, incredibly bright and beautiful little girl (if you don’t believe me, check out the pictures I’ve posted!). She brings so much happiness to her proud mummy and daddy.
We have learnt to deal with Jaymie’s condition, and although there is no cure for Cystic Fibrosis, there are many treatments that can help maintain Jaymie’s health for as long as possible.
Our medicine cabinet is enormous! Jaymie needs antibiotics 4 times a day to help her fend off infections, a range of vitamins and supplements twice a day. Before each meal, Jaymie must be given creon (a pancreatic enzyme), as her pancreas doesn’t function properly, to help her digest her food. Inhalers must be administered to help her break down mucus and special milk formulas taken to help her gain and maintain weight.
We must also attend regular hospital appointments to meet with a team of Cystic Fibrosis specialists, nurses, physiotherapists and dieticians. We dread these appointments. With Cystic Fibrosis, you never know what to expect. A bad result from one of Jaymie’s cough swabs (which we send into the children’s hospital weekly), or a cloudy chest x-ray, and Jaymie could be in store for a lengthy hospital stay. The apprehension is pure torture.
Without these medicines, treatments and care, Jaymie would be unlikely to make her first day of school. It’s through research that these treatments are developed and improve all the time. With better treatments, comes a better and longer life for our daughter. With the proper treatment Jaymie has a chance of living into late 30’s. Research and better treatments may mean Jaymie and others with CF can live even longer.
In addition to all of the above regular treatments, Jaymie endures gruelling chest physiotherapy 2 to 3 times a day for 30 minutes a time.
Jaymie’s physiotherapy involves Mummy and Daddy holding her down in various positions whilst firmly patting her chest with a rubber percusser. Although slowly getting used to it, Jaymie (as you can probably imagine) really hates it. The tears stream down her little cheeks, and she kicks and screams for us to let her go. It’s heart breaking, but we fight to maintain her health and shift the thick sticky mucus that clogs her lungs.
Jaymie’s condition isn’t all bad. In a weird way, it had made us appreciate what we have, and the time we have together so much more. Time is precious, and it is with this in mind that we are desperately trying to raise money to purchase Jaymie a physiotherapy vest which will help her, and us with part of her daily fight against Cystic Fibrosis.
The vest will not replace Jaymie’s chest physio altogether, but it will give her greater independence, a little more freedom, and the chance to manage her condition as she grows older in a more comfortable and less interfering way. The cost of these vests are in the region of £10,000 and they are not funded on the NHS.
Since Jaymie’s diagnosis, we have experienced some incredible kindness from those we know, and even people we didn’t. We are very humbled by their incredible support. If you can, please extend this kindness and make a donation towards Jaymie’s vest (no matter how small) it really would mean the world to our little family.
Rob, Louise and our little superstar Jaymie xx
Organizer
Rob Cain
Organizer
