Notes for our Songbird
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Chloe is many things to many people, a mother to her beautiful daughter Amelia-Rose, a wife to her selfless husband Tony, a sister, a daughter, a singer, a songwriter and a friend to all those lucky enough to have had her touch our lives.
However, Chloe's life, and that of her family, took an unexpected turn in 2012. In Chloe's words; "I was a married mum in my 20's, who was living a wonderful life by the sea when I suddenly became disabled. In October 2012 I had my first hip surgery and in August 2013 I was diagnosed with Ehlers Danlos Syndrome (EDS), also known as Joint Hypermobility Syndrome."
(EDS) is a collection of inherited conditions that fits into a larger group known as heritable disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones.
There are different types of EDS, but they have features in common. These can include joint hypermobility (increased mobility of joints, often resulting in painful dislocations), stretchy skin and tissue fragility. The fragile skin and unstable joints often found in EDS are the result of faulty collagen.
For Chloe, the condition, for which there is no cure, causes her joints to dislocate several times a day, and she lives with crippling exhaustion and constant pain. In her words: "The pain is awful. I mean really awful. I have lost the ability to remember what it feels like to not be in pain and I know most likely I will go to the grave not remembering what it is like to be pain free." More recently as a result of her condition, Chloe has had ileostomy surgery which had helped improve her daily life a little, but now old issues which she had thought dealt with, have once again resurfaced.
Chloe started a YouTube channel to help educate her friends and family about living with a chronic illness, but also to offer support to those going through something similar to her situation. You can view her channel here: Chloe's YouTube Channel: Unexpected Songbird One of the videos is one she made to help her friends understand on how to best support her or others with chronic illness (and yes, that is Chloe singing one of her songs in the background).
Beyond what Chloe has to deal with on a daily basis, her condition has also impacted her family. From missing milestones in the life of her daughter, Amelia-Rose, because she has been in the hospital recovering from numerous surgeries, to her husband Tony having to give up his paid employment to become Chloe's full-time caregiver. Chloe's condition has taken time from her and her family and added a significant financial strain as they now survive solely on the meagre medical benefit from the government (Disability Living Allowance).
As above, Chloe's words will be more telling than mine on the true effect of how her condition has impacted her family. As such, please have a look at a blog she started, to document the story of how her family is learning to live with chronic illness. Hopefully it will help give you some insight into what they are facing on a daily basis: Chloe's Blog: Hips, clicks and bendy bits!
As you can see from the blog, through it all, Chloe has maintained a sense of humour and positive attitude. As she told me; "I've not given up, I'm still me, I've still got my bubbly personality, it's just living inside a very broken body." She remains an inspiration to Amelia-Rose and to all who know her, as she deals with each issue and obstacle as it comes her way.
Chloe lives in the small south-western town of Bridport, England. A town she grew to love and has become home to her family, both immediate and extended. A town that she continues to give back to through volunteering at Amelia-Rose's school and a local food bank (The family also attends the food bank as a client, which helps to keep food costs down so that they can cover all their other bills.). She has become a part of the community, and in turn, the community has helped in her time of need through support and fundraising as much as the small town could. Unfortunately, her need has grown beyond her family's or the community's ability to provide and it is for this reason that we are turning to the global community in the hopes that you can help alleviate the financial burden that has befallen this lovely little family.
Beyond having to cover regular bills and expenses for the family, there are also specific expenses related to Chloe's chronic illness. These include but are not limited to:
- Travel and accommodation expenses for out-of-town hospital appointments.
- Private healthcare appointments.
- Weekly sound therapy appointments (to help pain management).
- Acupuncture (also for pain).
- Membership to an aquatic facility with a special warm pool for hydrotherapy.
- Regular massage (to help combat muscle fatigue).
- Vitamins, minerals and specialty foods to help joint pain and inflammation.
- Occupational health tools, like special cooking utensils, since her arthritis prevents her from using regular ones.
- Future surgeries (she is already waitlisted for a colectomy).
When I suggested making this page, Chloe wrote to me: "Thank you so much for wanting to help. People's kindness in all of this is a very beautiful thing. It really is, we've been very blessed during all of this with people's care and kindness." And so, whether you are a long-time friend of the family or meeting them through this page for the first time, if their story has touched your heart, we hope you will show your kindness and give generously to help alleviate one of the burdens of a family who has already had to deal with so much.
However, Chloe's life, and that of her family, took an unexpected turn in 2012. In Chloe's words; "I was a married mum in my 20's, who was living a wonderful life by the sea when I suddenly became disabled. In October 2012 I had my first hip surgery and in August 2013 I was diagnosed with Ehlers Danlos Syndrome (EDS), also known as Joint Hypermobility Syndrome."
(EDS) is a collection of inherited conditions that fits into a larger group known as heritable disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones.
There are different types of EDS, but they have features in common. These can include joint hypermobility (increased mobility of joints, often resulting in painful dislocations), stretchy skin and tissue fragility. The fragile skin and unstable joints often found in EDS are the result of faulty collagen.
For Chloe, the condition, for which there is no cure, causes her joints to dislocate several times a day, and she lives with crippling exhaustion and constant pain. In her words: "The pain is awful. I mean really awful. I have lost the ability to remember what it feels like to not be in pain and I know most likely I will go to the grave not remembering what it is like to be pain free." More recently as a result of her condition, Chloe has had ileostomy surgery which had helped improve her daily life a little, but now old issues which she had thought dealt with, have once again resurfaced.
Chloe started a YouTube channel to help educate her friends and family about living with a chronic illness, but also to offer support to those going through something similar to her situation. You can view her channel here: Chloe's YouTube Channel: Unexpected Songbird One of the videos is one she made to help her friends understand on how to best support her or others with chronic illness (and yes, that is Chloe singing one of her songs in the background).
Beyond what Chloe has to deal with on a daily basis, her condition has also impacted her family. From missing milestones in the life of her daughter, Amelia-Rose, because she has been in the hospital recovering from numerous surgeries, to her husband Tony having to give up his paid employment to become Chloe's full-time caregiver. Chloe's condition has taken time from her and her family and added a significant financial strain as they now survive solely on the meagre medical benefit from the government (Disability Living Allowance).
As above, Chloe's words will be more telling than mine on the true effect of how her condition has impacted her family. As such, please have a look at a blog she started, to document the story of how her family is learning to live with chronic illness. Hopefully it will help give you some insight into what they are facing on a daily basis: Chloe's Blog: Hips, clicks and bendy bits!
As you can see from the blog, through it all, Chloe has maintained a sense of humour and positive attitude. As she told me; "I've not given up, I'm still me, I've still got my bubbly personality, it's just living inside a very broken body." She remains an inspiration to Amelia-Rose and to all who know her, as she deals with each issue and obstacle as it comes her way.
Chloe lives in the small south-western town of Bridport, England. A town she grew to love and has become home to her family, both immediate and extended. A town that she continues to give back to through volunteering at Amelia-Rose's school and a local food bank (The family also attends the food bank as a client, which helps to keep food costs down so that they can cover all their other bills.). She has become a part of the community, and in turn, the community has helped in her time of need through support and fundraising as much as the small town could. Unfortunately, her need has grown beyond her family's or the community's ability to provide and it is for this reason that we are turning to the global community in the hopes that you can help alleviate the financial burden that has befallen this lovely little family.
Beyond having to cover regular bills and expenses for the family, there are also specific expenses related to Chloe's chronic illness. These include but are not limited to:
- Travel and accommodation expenses for out-of-town hospital appointments.
- Private healthcare appointments.
- Weekly sound therapy appointments (to help pain management).
- Acupuncture (also for pain).
- Membership to an aquatic facility with a special warm pool for hydrotherapy.
- Regular massage (to help combat muscle fatigue).
- Vitamins, minerals and specialty foods to help joint pain and inflammation.
- Occupational health tools, like special cooking utensils, since her arthritis prevents her from using regular ones.
- Future surgeries (she is already waitlisted for a colectomy).
When I suggested making this page, Chloe wrote to me: "Thank you so much for wanting to help. People's kindness in all of this is a very beautiful thing. It really is, we've been very blessed during all of this with people's care and kindness." And so, whether you are a long-time friend of the family or meeting them through this page for the first time, if their story has touched your heart, we hope you will show your kindness and give generously to help alleviate one of the burdens of a family who has already had to deal with so much.
Organizer
Dano Magee
Organizer
