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UPDATE #2 - Jessie's second surgery was a success! Her biggest hurdle now is finding a safe, healthy, and affordable place to live!
Since her second surgery, Jessie has seen many improvements. Many of her earlier symptoms have resolved for the most part. However, she’s still struggling with health challenges due to her extreme sensitivities to her current living conditions. We now know Jessie has a condition called Mast Cell Activation Syndrome (MCAS), which causes her body to go into an extreme, system-wide allergic reaction when she comes into contact with her triggers. These include mold, dust, household cleaners, most chemicals, extreme heat, extreme cold, and outdoor allergens. This is a major hurdle that’s impacting her quality of life every single day, and in many ways, a full recovery post-surgery is not possible until she is able to have a chemical-free, mold- and dust-free, climate-controlled place to live.
In the county where we live, there is no place like this for her to rent, and the only low-cost housing options available are aging buildings with issues like mold, lead water pipes, and peeling lead paint. Her fixed income is too low to qualify for Habitat for Humanity or a mortgage, so she has no safe options. She is greatly impacted on a daily basis by her current living space, both physically and mentally.
In looking for solutions, we've found building materials that are impervious to mold and low in harsh chemicals, and that would provide a healthy, safe, and climate-controlled environment for her. Because she is ineligible for a mortgage and has a severely limited income, we are working to raise as much funding as possible to help cover the cost of building a small home for her near our current home. This is intended to be a prototype structure that can be easily replicated for others in need of simple, safe housing. Once her small home is built, we hope to find grant or other funding to build additional small, safe homes for others with chronic illnesses like hers. We have been working with a group of wonderful businesses in the alternative building material industry who are enthusiastic about this project and the opportunity to develop prototype housing for those with various disabilities and health issues. We have some potential floor plans identified for small homes and are working to raise funds to begin the building process in the spring of 2022.
Your donations to this project will not only help Jessie take her health and quality of life to a whole new level but give us the expertise and experience to change the lives of others, like Jessie, who struggle daily with a toxic environment that severely impacts their health.
We truly appreciate every donation that was made to help me travel with her for her life-changing surgeries. Your generosity has been amazing, and we couldn’t have done it without you! This is the next step in Jessie’s recovery journey, and we are truly blessed to have each of you along for the ride!
Please help us spread the word about this meaningful project as far as possible! Every share counts and every donation brings us one step closer to giving Jessie a safe, meaningful place to continue to recover and thrive!
Blessings to all,
Laurie DeDecker
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UPDATE**Another surgery now necessary, scheduled in April!** (See the original story below)
Jessie continued to do well for the first few months after surgery, but started to see a decline in function in December 2020, both physically and cognitively. She began feeling like she did before her fusion, in addition to having several new and scary symptoms appear and intensify. She feels discouraged and scared, having lost most of the progress she made after her fusion.
Her neurosurgeon diagnosed her with Occult Tethered Cord Syndrome in February 2021. This means that, instead of having her spinal cord free and flexible as it should be, Jessie's spinal cord is attached to the wall of her spinal cavity. She's likely had this from birth, but her fusion surgery in September has increased the strain on her already taught spinal cord, and she is feeling worse and worse by the day. If left untreated, she could suffer organ damage and failure, and potentially lose the use of her legs.
The good news, however, is that her neurosurgeon offered her surgery to correct her OTC, a procedure called a 'section of the filum terminale', meaning that he can go in and cut her spinal cord free. This will halt or reverse the progression of the new symptoms and hopefully return her to the wonderful first few months she experienced post-fusion.
This means another trip from Michigan to New York City, and that I will need to accompany her again. This places the financial burden of another 2-3 weeks at a hotel, renting a car for that amount of time, plus food and meals. And, as I'm a contractor, I will also lose up to 3 weeks worth of income at a time where my family is already stretched thin financially.
I am truly grateful to everyone who donated to this campaign the first time, and still overwhelmed by your support!
Please, share this campaign wherever you can, and help me reach my goal so that my resilient, brave, amazing daughter can get her life back (again!).
Blessings,
Laurie DeDecker
My name is Laurie DeDecker, and this campaign is to raise money so that I can accompany my daughter to a life-changing surgery in another state.
Here is her story:
My daughter Jessie was a happy, healthy 12 year old girl in 7th grade when she got the flu and never recovered. She went from being a busy straight-A student to spending her life sick in bed, with debilitating symptoms. She had to drop out of school and lost most of her friends. She spent most of her time in a dark room, in pain and suffering from crushing fatigue, with no clear diagnosis and no hope for a recovery. She lost her way of life and her future.
A long journey through many specialists and failed treatments led to a diagnosis of Myalgic Encephalomyelitis, or ME/CFS, more commonly known as Chronic Fatigue syndrome, as well as having an immune system so compromised that she has three chronic viruses that even antiviral medications won’t get rid of. She also has diagnoses of POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, and Hypermobility Spectrum Disorder, as well as a host of pervasive symptoms like joint and muscle pain, light and sound sensitivity, and gastrointestinal issues that limit her diet. Some treatments have helped her in small ways, but she’s now 26 years old and is still housebound with a very low quality of life. Even simple things like taking a shower can leave her exhausted and in pain, and she really only leaves the house for doctor’s appointments.
As difficult and painful as her journey has been, Jessie has always come at life from a place of incredible inner strength and unconditional love. She has always held hope for a successful treatment, and though she struggles daily with the realities of living with a chronic illness, she has so much courage inside her that it has allowed her to make it this far. She is my hero!
In February 2020, the answer to her prayers came. She had a video conference with a neurosurgeon who specializes in Craniocervical Instability (CCI), and he diagnosed her with it with, in his words, “a high degree of certainty”. This means that the ligaments in Jessie’s neck are too weak to support her head, so the base of her skull is pushing on her brain and spinal cord, which, according to the neurosurgeon, is causing most of her symptoms and much of her disability.
The good news in this somewhat scary diagnosis is that the neurosurgeon offered her a definitive evaluation procedure (called invasive cervical traction), followed by a craniocervical fusion surgery, where her C1 and C2 vertebrae would be fused to the bottom of her skull, relieving the pressure on her brain and spinal cord. Her doctor believes that this will relieve most, if not all, of the symptoms she’s been disabled by for over 13 years! This is the good news she’s been waiting on!
The difficult part is that her neurosurgeon is in New York City and she lives in the Midwest. She is not able to travel alone because of her condition, and she cannot fly on a commercial airplane due to the pandemic and her severely compromised immune system. This makes travel much more difficult. I need to travel with her, and that will require that I take at least 3 weeks off of work, potentially needing more time off if she has to stay longer. I am a contractor, so I have no paid vacation and will simply lose my entire income for that time period.
This campaign is to help with my travel expenses, which include:
- A car rental (any form of public transportation is unsafe for Jessie due to her immunity issues)
- Lodging for myself for the duration of her stay in the hospital in New York
- Meals for myself
- Lost income for at least 3 weeks.
We are truly blessed to have finally found a diagnosis that offers my strong, resilient daughter a real chance at getting her life back, and I am very grateful to anyone and everyone who finds it in themselves to help us with this campaign.
I know that times are tough for a lot of people, so if you can't donate, please share this campaign wherever you can to get the word out - I am grateful for help in any form!
Love and light to you all!
- Laurie DeDecker
Since her second surgery, Jessie has seen many improvements. Many of her earlier symptoms have resolved for the most part. However, she’s still struggling with health challenges due to her extreme sensitivities to her current living conditions. We now know Jessie has a condition called Mast Cell Activation Syndrome (MCAS), which causes her body to go into an extreme, system-wide allergic reaction when she comes into contact with her triggers. These include mold, dust, household cleaners, most chemicals, extreme heat, extreme cold, and outdoor allergens. This is a major hurdle that’s impacting her quality of life every single day, and in many ways, a full recovery post-surgery is not possible until she is able to have a chemical-free, mold- and dust-free, climate-controlled place to live.
In the county where we live, there is no place like this for her to rent, and the only low-cost housing options available are aging buildings with issues like mold, lead water pipes, and peeling lead paint. Her fixed income is too low to qualify for Habitat for Humanity or a mortgage, so she has no safe options. She is greatly impacted on a daily basis by her current living space, both physically and mentally.
In looking for solutions, we've found building materials that are impervious to mold and low in harsh chemicals, and that would provide a healthy, safe, and climate-controlled environment for her. Because she is ineligible for a mortgage and has a severely limited income, we are working to raise as much funding as possible to help cover the cost of building a small home for her near our current home. This is intended to be a prototype structure that can be easily replicated for others in need of simple, safe housing. Once her small home is built, we hope to find grant or other funding to build additional small, safe homes for others with chronic illnesses like hers. We have been working with a group of wonderful businesses in the alternative building material industry who are enthusiastic about this project and the opportunity to develop prototype housing for those with various disabilities and health issues. We have some potential floor plans identified for small homes and are working to raise funds to begin the building process in the spring of 2022.
Your donations to this project will not only help Jessie take her health and quality of life to a whole new level but give us the expertise and experience to change the lives of others, like Jessie, who struggle daily with a toxic environment that severely impacts their health.
We truly appreciate every donation that was made to help me travel with her for her life-changing surgeries. Your generosity has been amazing, and we couldn’t have done it without you! This is the next step in Jessie’s recovery journey, and we are truly blessed to have each of you along for the ride!
Please help us spread the word about this meaningful project as far as possible! Every share counts and every donation brings us one step closer to giving Jessie a safe, meaningful place to continue to recover and thrive!
Blessings to all,
Laurie DeDecker
---------
UPDATE**Another surgery now necessary, scheduled in April!** (See the original story below)
Jessie continued to do well for the first few months after surgery, but started to see a decline in function in December 2020, both physically and cognitively. She began feeling like she did before her fusion, in addition to having several new and scary symptoms appear and intensify. She feels discouraged and scared, having lost most of the progress she made after her fusion.
Her neurosurgeon diagnosed her with Occult Tethered Cord Syndrome in February 2021. This means that, instead of having her spinal cord free and flexible as it should be, Jessie's spinal cord is attached to the wall of her spinal cavity. She's likely had this from birth, but her fusion surgery in September has increased the strain on her already taught spinal cord, and she is feeling worse and worse by the day. If left untreated, she could suffer organ damage and failure, and potentially lose the use of her legs.
The good news, however, is that her neurosurgeon offered her surgery to correct her OTC, a procedure called a 'section of the filum terminale', meaning that he can go in and cut her spinal cord free. This will halt or reverse the progression of the new symptoms and hopefully return her to the wonderful first few months she experienced post-fusion.
This means another trip from Michigan to New York City, and that I will need to accompany her again. This places the financial burden of another 2-3 weeks at a hotel, renting a car for that amount of time, plus food and meals. And, as I'm a contractor, I will also lose up to 3 weeks worth of income at a time where my family is already stretched thin financially.
I am truly grateful to everyone who donated to this campaign the first time, and still overwhelmed by your support!
Please, share this campaign wherever you can, and help me reach my goal so that my resilient, brave, amazing daughter can get her life back (again!).
Blessings,
Laurie DeDecker
My name is Laurie DeDecker, and this campaign is to raise money so that I can accompany my daughter to a life-changing surgery in another state.
Here is her story:
My daughter Jessie was a happy, healthy 12 year old girl in 7th grade when she got the flu and never recovered. She went from being a busy straight-A student to spending her life sick in bed, with debilitating symptoms. She had to drop out of school and lost most of her friends. She spent most of her time in a dark room, in pain and suffering from crushing fatigue, with no clear diagnosis and no hope for a recovery. She lost her way of life and her future.
A long journey through many specialists and failed treatments led to a diagnosis of Myalgic Encephalomyelitis, or ME/CFS, more commonly known as Chronic Fatigue syndrome, as well as having an immune system so compromised that she has three chronic viruses that even antiviral medications won’t get rid of. She also has diagnoses of POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, and Hypermobility Spectrum Disorder, as well as a host of pervasive symptoms like joint and muscle pain, light and sound sensitivity, and gastrointestinal issues that limit her diet. Some treatments have helped her in small ways, but she’s now 26 years old and is still housebound with a very low quality of life. Even simple things like taking a shower can leave her exhausted and in pain, and she really only leaves the house for doctor’s appointments.
As difficult and painful as her journey has been, Jessie has always come at life from a place of incredible inner strength and unconditional love. She has always held hope for a successful treatment, and though she struggles daily with the realities of living with a chronic illness, she has so much courage inside her that it has allowed her to make it this far. She is my hero!
In February 2020, the answer to her prayers came. She had a video conference with a neurosurgeon who specializes in Craniocervical Instability (CCI), and he diagnosed her with it with, in his words, “a high degree of certainty”. This means that the ligaments in Jessie’s neck are too weak to support her head, so the base of her skull is pushing on her brain and spinal cord, which, according to the neurosurgeon, is causing most of her symptoms and much of her disability.
The good news in this somewhat scary diagnosis is that the neurosurgeon offered her a definitive evaluation procedure (called invasive cervical traction), followed by a craniocervical fusion surgery, where her C1 and C2 vertebrae would be fused to the bottom of her skull, relieving the pressure on her brain and spinal cord. Her doctor believes that this will relieve most, if not all, of the symptoms she’s been disabled by for over 13 years! This is the good news she’s been waiting on!
The difficult part is that her neurosurgeon is in New York City and she lives in the Midwest. She is not able to travel alone because of her condition, and she cannot fly on a commercial airplane due to the pandemic and her severely compromised immune system. This makes travel much more difficult. I need to travel with her, and that will require that I take at least 3 weeks off of work, potentially needing more time off if she has to stay longer. I am a contractor, so I have no paid vacation and will simply lose my entire income for that time period.
This campaign is to help with my travel expenses, which include:
- A car rental (any form of public transportation is unsafe for Jessie due to her immunity issues)
- Lodging for myself for the duration of her stay in the hospital in New York
- Meals for myself
- Lost income for at least 3 weeks.
We are truly blessed to have finally found a diagnosis that offers my strong, resilient daughter a real chance at getting her life back, and I am very grateful to anyone and everyone who finds it in themselves to help us with this campaign.
I know that times are tough for a lot of people, so if you can't donate, please share this campaign wherever you can to get the word out - I am grateful for help in any form!
Love and light to you all!
- Laurie DeDecker