Steps 4 Sienna No Stopping 4 Noah
Donation protected
Steps for Sienna, No Stopping for Noah
Growing up me and my best friend Shelby did everything together; mainly we played pretend about what our futures would be like. We planned our families and how we would be friends forever and one another’s children’s God Mothers (which I am glad to tell you did happen!). We picked our children’s names, imagined what they would look like and planned every last details. But little did we know we had missed one big, life changing detail. We didn’t plan for everything, because we couldn’t plan for the unimaginable. We didn’t plan for Shelby’s two children to have an incurable genetic disease that would see them in and out of hospital and reduce their life expectancy.
Shelby, at just 23 years old, has had to face every parent’s worst nightmare… twice.
Our friendship has spanned almost 20 years and we are family now. Like anyone, we do whatever we can, however we can to help our family. So that’s how this fundraising campaign, Steps for Sienna No Stopping for Noah, came to be. So together with Shelby, her friends and family, we will run, walk, swim and whatever else we can do to raise money to improve Sienna and Noah’s quality of life through purchasing a Chest Wall Oscillation (HFCWO) vest.
I would never be able to find the words to explain how Shelby, as a mother, feels about the future her and her children have been faced with, so I implore you to read below what Shelby has to say.
“Cystic fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with cystic fibrosis and cannot catch it later in life, but one in 25 of us carry the faulty gene that causes it, usually without even knowing.
Cystic fibrosis is classed as rare because it affects only one baby in 2,500 in the UK. There is no cure for cystic fibrosis, but specialised medical care helps ease the condition.
To have CF, you need to have inherited two faulty copies of the gene (one from each parent), and as there are many different gene mutations that cause cystic fibrosis, each person with the condition can have very different symptoms depending on the two genes they carry. While people with CF often look healthy on the outside, each individual is battling their own range of symptoms on a daily basis.
On the 26th of May 2016, my daughter arrived 6 weeks early. We now believe, looking back, that Sienna was suffering with meconium ileus which is a bowel obstruction that occurs when the meconium in your child’s intestine is even thicker and sticker than normal meconium, creating a blockage in a part of the small intestine called ileum. At the time, this was a very scary and stressful situation as Sienna was in Ormskirk Neonatal unit, unaware of the life changing condition she was about to be diagnosed with. After 72 hours, Sienna was still struggling and had to be transferred to Alder Hey for further investigation.
On the fifth day Sienna had her new born screening, commonly known as the heel-prick test. This is were a sample of blood is taken as part of the normal Guthrie test carried out on all babies.
A few days later, I was taken to a private room and asked to have a member of my family with me, not knowing why I was being asked these questions and taken away from my unwell, new born baby. As I sat in the room, with five specialists staring back at me, all I could do was think the worst. The specialist nurse spoke calmly and informed me that Sienna’s condition was due to the fact she had now been diagnosed with Cystic Fibrosis. This was a massive shock to my family and I, as nobody had any idea what CF was or that we even carried the faulty gene.
After receiving the news, I then had to very quickly learn how to give my baby physio therapy and medication to help keep her well. Sienna is now 14 months old, but during her first year of life she has been to numerous CF clinics, several admissions to hospital for intravenous antibiotics and one admission to hospital for a bronchoscopy. Each visit is for 2 weeks at a time which obviously has an effect on Sienna’s day to day life.
During the past year I have been doing a huge amount of research and feel that a high frequency Chest Wall Oscillation (HFCWO) – an electric air pulse generator that connects to an inflatable jacket (vest) to vibrate the chest would be extremely beneficial to Sienna’s condition.
An additional reason for wanting to fundraise to get a HFCWO is, on the 29th of June 2017 I had my second child. Throughout my pregnancy I wholeheartedly believed despite the 1 in 4 chance that Noah would be born healthy. During the birth, as a precaution, cord blood was taken so we could get a quicker diagnosis. Everything was completely different when compared to Sienna. Noah was born at 37 weeks and luckily was able to come home straight away. Once at home Noah didn’t show any signs of having CF, apart from losing a significant amount of weight which I believed was due to him being breast fed.
On the 10th day, the specialist nurse and physio therapist that broke the news to me about Sienna visited me at home. Unfortunately, my intuition was wrong as they informed me that Noah also has Cystic Fibrosis.
This then opened new challenges as one of the most striking features of cystic fibrosis is cross infection – the risk that people with CF pose to each other. Two people with the condition should never meet face to face, as their lungs will harbour specific bugs/infections that could cause a serious infection in someone else with the condition. This means separate bedrooms, separate physio sessions and as much as possible separate toys. As you can imagine keeping my two children apart is a near impossible task.
Currently, Sienna and Noah both have to have physio therapy. Sienna has it once a day for a minimum of 25 minutes, this is 5 minutes per side: back sat up, back laying down, left side, right side and her chest. As you can imagine getting a 14 month old that's currently into everything to lie still for 25 minutes whilst you do her physio is challenging in itself. Noah is currently only 3 weeks old so he has the same areas but only 2 minutes each side, but in a few months his will be increased to 5 minutes per side also. When Sienna and Noah are well physio happens once a day as a routine, but if they become unwell physio needs increasing to 3 times a day to help kick the infection.
This is obviously a time consuming process and now with having the two of them their physio sessions have to be completed in separate rooms to avoid cross infection. This is extremely difficult as I cannot split myself in half, although I wish I could!
The vest will help out with this massively, although manual physio therapy will still happen the vest will play a massive part in helping move any mucus around their lungs as it's designed to assist patients in the mobilisation of retained secretions that, if not removed, may lead to increased rates of respiratory infection, hospitalisation and reduced lung function.
I’m a 23 year old girl whose life has now changed forever, but want to give my children the best possible chance in life by fundraising as much as possible to keep them alive.”
Growing up me and my best friend Shelby did everything together; mainly we played pretend about what our futures would be like. We planned our families and how we would be friends forever and one another’s children’s God Mothers (which I am glad to tell you did happen!). We picked our children’s names, imagined what they would look like and planned every last details. But little did we know we had missed one big, life changing detail. We didn’t plan for everything, because we couldn’t plan for the unimaginable. We didn’t plan for Shelby’s two children to have an incurable genetic disease that would see them in and out of hospital and reduce their life expectancy.
Shelby, at just 23 years old, has had to face every parent’s worst nightmare… twice.
Our friendship has spanned almost 20 years and we are family now. Like anyone, we do whatever we can, however we can to help our family. So that’s how this fundraising campaign, Steps for Sienna No Stopping for Noah, came to be. So together with Shelby, her friends and family, we will run, walk, swim and whatever else we can do to raise money to improve Sienna and Noah’s quality of life through purchasing a Chest Wall Oscillation (HFCWO) vest.
I would never be able to find the words to explain how Shelby, as a mother, feels about the future her and her children have been faced with, so I implore you to read below what Shelby has to say.
“Cystic fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with cystic fibrosis and cannot catch it later in life, but one in 25 of us carry the faulty gene that causes it, usually without even knowing.
Cystic fibrosis is classed as rare because it affects only one baby in 2,500 in the UK. There is no cure for cystic fibrosis, but specialised medical care helps ease the condition.
To have CF, you need to have inherited two faulty copies of the gene (one from each parent), and as there are many different gene mutations that cause cystic fibrosis, each person with the condition can have very different symptoms depending on the two genes they carry. While people with CF often look healthy on the outside, each individual is battling their own range of symptoms on a daily basis.
On the 26th of May 2016, my daughter arrived 6 weeks early. We now believe, looking back, that Sienna was suffering with meconium ileus which is a bowel obstruction that occurs when the meconium in your child’s intestine is even thicker and sticker than normal meconium, creating a blockage in a part of the small intestine called ileum. At the time, this was a very scary and stressful situation as Sienna was in Ormskirk Neonatal unit, unaware of the life changing condition she was about to be diagnosed with. After 72 hours, Sienna was still struggling and had to be transferred to Alder Hey for further investigation.
On the fifth day Sienna had her new born screening, commonly known as the heel-prick test. This is were a sample of blood is taken as part of the normal Guthrie test carried out on all babies.
A few days later, I was taken to a private room and asked to have a member of my family with me, not knowing why I was being asked these questions and taken away from my unwell, new born baby. As I sat in the room, with five specialists staring back at me, all I could do was think the worst. The specialist nurse spoke calmly and informed me that Sienna’s condition was due to the fact she had now been diagnosed with Cystic Fibrosis. This was a massive shock to my family and I, as nobody had any idea what CF was or that we even carried the faulty gene.
After receiving the news, I then had to very quickly learn how to give my baby physio therapy and medication to help keep her well. Sienna is now 14 months old, but during her first year of life she has been to numerous CF clinics, several admissions to hospital for intravenous antibiotics and one admission to hospital for a bronchoscopy. Each visit is for 2 weeks at a time which obviously has an effect on Sienna’s day to day life.
During the past year I have been doing a huge amount of research and feel that a high frequency Chest Wall Oscillation (HFCWO) – an electric air pulse generator that connects to an inflatable jacket (vest) to vibrate the chest would be extremely beneficial to Sienna’s condition.
An additional reason for wanting to fundraise to get a HFCWO is, on the 29th of June 2017 I had my second child. Throughout my pregnancy I wholeheartedly believed despite the 1 in 4 chance that Noah would be born healthy. During the birth, as a precaution, cord blood was taken so we could get a quicker diagnosis. Everything was completely different when compared to Sienna. Noah was born at 37 weeks and luckily was able to come home straight away. Once at home Noah didn’t show any signs of having CF, apart from losing a significant amount of weight which I believed was due to him being breast fed.
On the 10th day, the specialist nurse and physio therapist that broke the news to me about Sienna visited me at home. Unfortunately, my intuition was wrong as they informed me that Noah also has Cystic Fibrosis.
This then opened new challenges as one of the most striking features of cystic fibrosis is cross infection – the risk that people with CF pose to each other. Two people with the condition should never meet face to face, as their lungs will harbour specific bugs/infections that could cause a serious infection in someone else with the condition. This means separate bedrooms, separate physio sessions and as much as possible separate toys. As you can imagine keeping my two children apart is a near impossible task.
Currently, Sienna and Noah both have to have physio therapy. Sienna has it once a day for a minimum of 25 minutes, this is 5 minutes per side: back sat up, back laying down, left side, right side and her chest. As you can imagine getting a 14 month old that's currently into everything to lie still for 25 minutes whilst you do her physio is challenging in itself. Noah is currently only 3 weeks old so he has the same areas but only 2 minutes each side, but in a few months his will be increased to 5 minutes per side also. When Sienna and Noah are well physio happens once a day as a routine, but if they become unwell physio needs increasing to 3 times a day to help kick the infection.
This is obviously a time consuming process and now with having the two of them their physio sessions have to be completed in separate rooms to avoid cross infection. This is extremely difficult as I cannot split myself in half, although I wish I could!
The vest will help out with this massively, although manual physio therapy will still happen the vest will play a massive part in helping move any mucus around their lungs as it's designed to assist patients in the mobilisation of retained secretions that, if not removed, may lead to increased rates of respiratory infection, hospitalisation and reduced lung function.
I’m a 23 year old girl whose life has now changed forever, but want to give my children the best possible chance in life by fundraising as much as possible to keep them alive.”
Organizer
Nikola Thorpe
Organizer
