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This is my daughter, Nicole.
She’s only 17, and has multiple medical conditions that make it incredibly hard, not only for her, but for our family, both emotionally and financially. Because of all her medical issues, it is very hard for us to make ends meet, because of how much we have to spend on her doctor's appointments, physical therapy, medication, and many other treatments. Here is what Nicole has:
Ehlers-Danlos Syndrome (EDS) type 3: Hypermobility- Nicole's version of EDS is a connective tissue disease which causes the tissues, such as collagen, in her body to slowly disintegrate and thin out. This affects every muscle, ligament and tendon. Also, EDS causes chronic pain, chronic fatigue and very poor sleeping habits. EDS is the cause of all the stretchiness, dislocations, popping, cracking, and weakness in her joints. She usually has to use a cane when walking, and on bad days, she’s either in a wheelchair or using a walker. With help from daily medications, Nicole’s pain threshold is usually lowered just enough. Weather, stress, excessive amounts of walking, or long periods of sitting down, lying down, or standing can affect her daily pain threshold. Flare ups in cartilage cause unpredictable spasms and muscle tightening that can result in the tissue, ligaments or tendons in her body ripping and tearing.
Raynauds Syndrome– Nicole's veins are too small to regulate her blood, so her hands and feet, (where blood from the heart travels the furthest), turn blue, purple and sometimes red because she's either not getting enough blood or blood pools there. This can make touching hot or cold things very painful. Even taking showers is very difficult.
P.O.T.S.- P.O.T.S. Or Postural Orthostatic Tachycardia Syndrome is a condition that causes severe dizziness when walking, or transitioning between standing, sitting, and laying down. It can affect her blood pressure, making it very low or very high, as well as affecting her heart, and other parts of her body. P.O.T.S. also causes a severe sodium deficiency and makes it incredibly hard for Nicole’s body to retain salt; Nicole is able to keep this deficiency more or less under control by taking daily medication.
Mass Phenotype–Due to the EDS, Nicole’s skin is thinning out and this causes an excessive amount of stretch marks to appear on her body. These stretch marks can hurt, sting, increase in severity and occasionally split open. While this skin problem is not always a big issue, more patches continually appear, usually worsening in severity when a joint dislocates.
Epilepsy– Nicole has been dealing with petit-mal, grand-mal, and sleep seizures all her life. She has had to have an aide in school. While the epilepsy has not directly affected her for years, it’s not gone, and she still can not look at things such as flashing lights, strobe lights or other things that can trigger seizures.
Fibromyalgia–Along with the chronic pain connective-tissue disease, Nicole has Fibromyalgia. Fibromyalgia over stimulates the nerve endings which results in incredible tactile sensitivity. For example, a light touch to her torso may cause unbearable pain, especially in cold weather.
Patello-Femoral Syndrome-Due to the EDS, the cartilage in Nicole’s knees and knee caps has been severely thinned out and damaged, causing extreme amounts of pain and deformity in her knees.
Femoral Anteversion- Nicole, since she was born, has had a thigh bone and hip deformity, causing her hips and legs to tilt in, creating a pigeon-toed appearance. This was discovered at the age of fourteen, and has increased the pain whenever she tries to walk straight.
Autonomic Dysreflexia- Autonomic Dysreflexia (AD) is a condition where the nervous system overreacts to external bodily stimulation. AD can cause dangerous spikes and falls in Nicole’s blood pressure, very rapid heart beats, constrict peripheral blood vessels, and change autonomic functions in the body.
She also has severe arthritis due to her EDS and Fibromyalgia.
We’re a family of six with only one source of income. One parent has to be available for the frequent doctor appointments, as well as to answer the frequent emergency calls from Nicole’s high school. Nicole's medical expenses have put a large strain on our finances. If we were to get the money from this gofundme, we would be able to get the equipment to do her physical therapy at home, saving us time and money. If her equipment were at home, Nicole could do her physical therapy whenever she felt it necessary, instead of having to wait for an appointment. This doesn't include her water therapy, though, which is just as important. Insurance covers a certain amount of visits per week (1 visit per week), but Nicole is at the point where one visit per week isn't enough, and all extra visits I would have to pay out of pocket. Here's a picture of her at water therapy:
These are what we need to buy, not covered by our medical insurance, to help Nicole manage her pain and try to slow down elasticity from her EDS: Ring splints, thumb splints, knuckle splints, a new wheelchair, knee braces, Dawn Joy hinged ankle brace, shoulder braces, elbow braces, a non-plastic spinal brace, a stabilizing cane, a walker, and exercise equipment to keep up her physical therapy at home. We also need to spend on water therapy visits, and doctors appointments with multiple specialists.
There have been days when Nicole has been unable to move at all because of the severe pain she experiences from her combined conditions. She cannot get through a full day of school without some bone coming out of its socket due to her EDS, or being in severe pain all day and needing to be taken home. On an average, I have to go to her school every other day to pop basically her entire right side back into position because everything just popped out of its joints.
Nicole has an excellent medically qualified one-on-one paraprofessional at school, without whom Nicole would hardly be able to make it through the day, even with her incredible willpower. Nicole’s emotional and psychological health is absolutely tied to her life at school with her friends. It is the only “normal” experience she currently enjoys. Nicole is an extremely gifted student, especially in her ability to express her feelings in poems and prose. Her goal is to major in Child Psychology and minor in English.
As for her home life, most days she'll be walking around the house and a random joint will just dislocate with no warning, and I have to pop it back in. Each of these events, at home and at school, always puts her in horrible pain. Her doctors predict that, by the time she’s in her mid- to late- 20s, Nicole will be very reliant on a wheelchair, more often than not, to get around. She doesn't leave the house except to attend school, because there is always the high chance that her bones will pop out and require immediate attention. When she does leave the house, she can’t last very long because of the stress on her body, due to the EDS, and in combination with the Raynauds Syndrome, it makes it even worse. Now, add in the P.O.T.S., and lack of sodium to the total picture, which causes her to get lightheaded and occasionally pass out. This is what a day in Nicole’s life includes.
If we were to get enough money to help pay for all of this, it would give Nicole a chance at what she truly deserves: a near-normal life.
Thank you for your support. We deeply appreciate it.
She’s only 17, and has multiple medical conditions that make it incredibly hard, not only for her, but for our family, both emotionally and financially. Because of all her medical issues, it is very hard for us to make ends meet, because of how much we have to spend on her doctor's appointments, physical therapy, medication, and many other treatments. Here is what Nicole has:
Ehlers-Danlos Syndrome (EDS) type 3: Hypermobility- Nicole's version of EDS is a connective tissue disease which causes the tissues, such as collagen, in her body to slowly disintegrate and thin out. This affects every muscle, ligament and tendon. Also, EDS causes chronic pain, chronic fatigue and very poor sleeping habits. EDS is the cause of all the stretchiness, dislocations, popping, cracking, and weakness in her joints. She usually has to use a cane when walking, and on bad days, she’s either in a wheelchair or using a walker. With help from daily medications, Nicole’s pain threshold is usually lowered just enough. Weather, stress, excessive amounts of walking, or long periods of sitting down, lying down, or standing can affect her daily pain threshold. Flare ups in cartilage cause unpredictable spasms and muscle tightening that can result in the tissue, ligaments or tendons in her body ripping and tearing.
Raynauds Syndrome– Nicole's veins are too small to regulate her blood, so her hands and feet, (where blood from the heart travels the furthest), turn blue, purple and sometimes red because she's either not getting enough blood or blood pools there. This can make touching hot or cold things very painful. Even taking showers is very difficult.
P.O.T.S.- P.O.T.S. Or Postural Orthostatic Tachycardia Syndrome is a condition that causes severe dizziness when walking, or transitioning between standing, sitting, and laying down. It can affect her blood pressure, making it very low or very high, as well as affecting her heart, and other parts of her body. P.O.T.S. also causes a severe sodium deficiency and makes it incredibly hard for Nicole’s body to retain salt; Nicole is able to keep this deficiency more or less under control by taking daily medication.
Mass Phenotype–Due to the EDS, Nicole’s skin is thinning out and this causes an excessive amount of stretch marks to appear on her body. These stretch marks can hurt, sting, increase in severity and occasionally split open. While this skin problem is not always a big issue, more patches continually appear, usually worsening in severity when a joint dislocates.
Epilepsy– Nicole has been dealing with petit-mal, grand-mal, and sleep seizures all her life. She has had to have an aide in school. While the epilepsy has not directly affected her for years, it’s not gone, and she still can not look at things such as flashing lights, strobe lights or other things that can trigger seizures.
Fibromyalgia–Along with the chronic pain connective-tissue disease, Nicole has Fibromyalgia. Fibromyalgia over stimulates the nerve endings which results in incredible tactile sensitivity. For example, a light touch to her torso may cause unbearable pain, especially in cold weather.
Patello-Femoral Syndrome-Due to the EDS, the cartilage in Nicole’s knees and knee caps has been severely thinned out and damaged, causing extreme amounts of pain and deformity in her knees.
Femoral Anteversion- Nicole, since she was born, has had a thigh bone and hip deformity, causing her hips and legs to tilt in, creating a pigeon-toed appearance. This was discovered at the age of fourteen, and has increased the pain whenever she tries to walk straight.
Autonomic Dysreflexia- Autonomic Dysreflexia (AD) is a condition where the nervous system overreacts to external bodily stimulation. AD can cause dangerous spikes and falls in Nicole’s blood pressure, very rapid heart beats, constrict peripheral blood vessels, and change autonomic functions in the body.
She also has severe arthritis due to her EDS and Fibromyalgia.
We’re a family of six with only one source of income. One parent has to be available for the frequent doctor appointments, as well as to answer the frequent emergency calls from Nicole’s high school. Nicole's medical expenses have put a large strain on our finances. If we were to get the money from this gofundme, we would be able to get the equipment to do her physical therapy at home, saving us time and money. If her equipment were at home, Nicole could do her physical therapy whenever she felt it necessary, instead of having to wait for an appointment. This doesn't include her water therapy, though, which is just as important. Insurance covers a certain amount of visits per week (1 visit per week), but Nicole is at the point where one visit per week isn't enough, and all extra visits I would have to pay out of pocket. Here's a picture of her at water therapy:
These are what we need to buy, not covered by our medical insurance, to help Nicole manage her pain and try to slow down elasticity from her EDS: Ring splints, thumb splints, knuckle splints, a new wheelchair, knee braces, Dawn Joy hinged ankle brace, shoulder braces, elbow braces, a non-plastic spinal brace, a stabilizing cane, a walker, and exercise equipment to keep up her physical therapy at home. We also need to spend on water therapy visits, and doctors appointments with multiple specialists.
There have been days when Nicole has been unable to move at all because of the severe pain she experiences from her combined conditions. She cannot get through a full day of school without some bone coming out of its socket due to her EDS, or being in severe pain all day and needing to be taken home. On an average, I have to go to her school every other day to pop basically her entire right side back into position because everything just popped out of its joints.
Nicole has an excellent medically qualified one-on-one paraprofessional at school, without whom Nicole would hardly be able to make it through the day, even with her incredible willpower. Nicole’s emotional and psychological health is absolutely tied to her life at school with her friends. It is the only “normal” experience she currently enjoys. Nicole is an extremely gifted student, especially in her ability to express her feelings in poems and prose. Her goal is to major in Child Psychology and minor in English.
As for her home life, most days she'll be walking around the house and a random joint will just dislocate with no warning, and I have to pop it back in. Each of these events, at home and at school, always puts her in horrible pain. Her doctors predict that, by the time she’s in her mid- to late- 20s, Nicole will be very reliant on a wheelchair, more often than not, to get around. She doesn't leave the house except to attend school, because there is always the high chance that her bones will pop out and require immediate attention. When she does leave the house, she can’t last very long because of the stress on her body, due to the EDS, and in combination with the Raynauds Syndrome, it makes it even worse. Now, add in the P.O.T.S., and lack of sodium to the total picture, which causes her to get lightheaded and occasionally pass out. This is what a day in Nicole’s life includes.
If we were to get enough money to help pay for all of this, it would give Nicole a chance at what she truly deserves: a near-normal life.
Thank you for your support. We deeply appreciate it.