Maddie's Cancer / Turners Fund
Donation protected
Maddie was born with Turners Syndrome and is now faced with the challenge of Cancer. Her private insurance company has determined this as a pre-existing condition and will not cover the cost of her medical needs. https://www.healthcare.gov/health-care-law-protections/pre-existing-conditions/
What we are up against insurance wise: We have a grandfathered policy that does not have to cover pre-existing conditions and the new policy does not take affect until Dec 31 at midnight.
Maddie has Stage 2 Gonadoblastoma / Dysgenetic gonadoma. .The tumors are malignant. They believe that it is localized.
So what does this mean? Bear with me as I try to explain.
Stage 2 means...cancer is growing, but it is still contained.
Gonadoblastoma is.....Her gonadal streaks (pieces of tissue in place of her ovaries) that have cancerous cells or a tumor in the tissue. Most are benign but some do turn becoming malignant.
Dysgenetic gonadoma is .......the 3 types of tumors / epithelial, sex cord, and germ cell. ( Maddie has germ cell)
Treatment options..... surgery called bilateral gonadectomy.
followed with Chemo, Radiation, Both.
What is Turner syndrome: Turner Syndrome occurs in one out of every 5000 live female births.Turner Syndrome is a chromosomal anomaly.
The condition that affects ONLY girls
Babies are usually born with 23 pairs of chromosomes. One pair of chromosomes determines the baby's sex. This pair are known as the sex chromosomes.
One sex chromosome comes from the father and the other one comes from the mother. The mother’s contribution is always an X chromosome. The father’s contribution can either be an X or a Y chromosome.
A baby girl usually has two X chromosomes (XX) and boys have an X and a Y chromosome (XY). The Y chromosome determines ‘maleness’, so if it is missing as in Turner syndrome, the sex of the child will invariably be female.
A female with Turner syndrome has part or all of one X chromosome missing. This means the girl has just one complete X chromosome rather than two.
Signs and symptoms of Turner syndrome may vary significantly. Turner syndrome can cause a variety of medical and developmental problems
Birth+.................
Large fluid collection on the back of the neck or other abnormal fluid collections
Heart abnormalities
U shaped kidneys
Brain aneurysms / brain lesions
Wide or web like neck
Receding or small lower jaw
High, narrow roof of the mouth (palate)
Low-set ears
Low hairline at the back of the head
Broad chest with widely spaced nipples
Short fingers and toes
Arms that turn outward at the elbows
Spoon shaped fingernails and toenails that are narrow and turned upward
Swelling of the hands and feet, especially at birth
Slightly smaller than average height at birth
Delayed growth
In teen years.....
No growth spurts at expected times in childhood
Short stature, with an adult height of about 8 inches (20 centimeters) less than might be expected for a female member of her family
Learning disabilities, particularly with learning that involves spatial concepts or math, though intelligence is usually normal
Difficulty in social situations, such as problems understanding other people's emotions or reactions
Failure to begin sexual changes expected during puberty — due to ovarian failure that may have occurred by birth or gradually during childhood, adolescence or young adulthood
Sexual development that "stalls" during teenage years
Early end to menstrual cycles not due to pregnancy
For most women with Turner syndrome, inability to conceive a child without fertility treatment
What we are up against insurance wise: We have a grandfathered policy that does not have to cover pre-existing conditions and the new policy does not take affect until Dec 31 at midnight.
Maddie has Stage 2 Gonadoblastoma / Dysgenetic gonadoma. .The tumors are malignant. They believe that it is localized.
So what does this mean? Bear with me as I try to explain.
Stage 2 means...cancer is growing, but it is still contained.
Gonadoblastoma is.....Her gonadal streaks (pieces of tissue in place of her ovaries) that have cancerous cells or a tumor in the tissue. Most are benign but some do turn becoming malignant.
Dysgenetic gonadoma is .......the 3 types of tumors / epithelial, sex cord, and germ cell. ( Maddie has germ cell)
Treatment options..... surgery called bilateral gonadectomy.
followed with Chemo, Radiation, Both.
What is Turner syndrome: Turner Syndrome occurs in one out of every 5000 live female births.Turner Syndrome is a chromosomal anomaly.
The condition that affects ONLY girls
Babies are usually born with 23 pairs of chromosomes. One pair of chromosomes determines the baby's sex. This pair are known as the sex chromosomes.
One sex chromosome comes from the father and the other one comes from the mother. The mother’s contribution is always an X chromosome. The father’s contribution can either be an X or a Y chromosome.
A baby girl usually has two X chromosomes (XX) and boys have an X and a Y chromosome (XY). The Y chromosome determines ‘maleness’, so if it is missing as in Turner syndrome, the sex of the child will invariably be female.
A female with Turner syndrome has part or all of one X chromosome missing. This means the girl has just one complete X chromosome rather than two.
Signs and symptoms of Turner syndrome may vary significantly. Turner syndrome can cause a variety of medical and developmental problems
Birth+.................
Large fluid collection on the back of the neck or other abnormal fluid collections
Heart abnormalities
U shaped kidneys
Brain aneurysms / brain lesions
Wide or web like neck
Receding or small lower jaw
High, narrow roof of the mouth (palate)
Low-set ears
Low hairline at the back of the head
Broad chest with widely spaced nipples
Short fingers and toes
Arms that turn outward at the elbows
Spoon shaped fingernails and toenails that are narrow and turned upward
Swelling of the hands and feet, especially at birth
Slightly smaller than average height at birth
Delayed growth
In teen years.....
No growth spurts at expected times in childhood
Short stature, with an adult height of about 8 inches (20 centimeters) less than might be expected for a female member of her family
Learning disabilities, particularly with learning that involves spatial concepts or math, though intelligence is usually normal
Difficulty in social situations, such as problems understanding other people's emotions or reactions
Failure to begin sexual changes expected during puberty — due to ovarian failure that may have occurred by birth or gradually during childhood, adolescence or young adulthood
Sexual development that "stalls" during teenage years
Early end to menstrual cycles not due to pregnancy
For most women with Turner syndrome, inability to conceive a child without fertility treatment
Organizer
Gavin Michels
Organizer
Spokane, WA
