Help twins with genetic disorder
Donation protected
In February 2012, mom and dad found out they were having natural twins (no fertility drugs needed). Fast forward to 33 weeks......
Ashley and Sarah, identical twins, were born 7 weeks early (3 lbs., 14 oz. and 5lbs, 1 oz. respectively) and spent close to a month in the NICU before finally being healthy enough to come home. The medical bills from their birth alone were over $200,000 - of which they were responsible for 20%.
They thought they had jumped through every hurdle, until they found out that Ashley had extreme torticollis and plagiocephaly at 3 months. This required several medical procedures, where she was eventually fitted with a "helmet" that would help to shape her head to a normal figure. It partially worked. However, after a year and a half of occupational therapy, they learned Ashley had half of a vertebrae missing in her cervical spine (neck).
At 1 year, they started noticing that both twins displayed a unique rash which, despite every effort, couldn't be resolved. After what seemed like hundreds of doctor visits, they were referred to a geneticist. Sarah and Ashley were diagnosed with incontinentia pigmenti, which is an extremely rare genetic disorder. (Less than 2,000 cases reported in scientific literature)
The process of getting diagnosed included both twins undergoing MRI's and eye exams under anesthesia, dental visits, dermatology appointments, genetic doctor appointments, X-rays, general practitioner appointments, orthopedic specialist visits, neurology visits, plus many more.
Incontinentia pigmenti (IP) is a genetic disorder that has no cure. It flares up without reason, and there is no known cause or treatment. It can attach itself to the vital organs, kidneys, eyes, brain, teeth, and can eventually lead to incapacitation. They have had several flare ups in the past 2.5 years. It is painful, and can only be treated with skin creams (for skin rashes). It presents in the form of serious blisters all over their bodies, specifically on the arms, and legs. Once the blisters heal, they leave a permanent scar. Pictures are available if you would like to see an idea of the chaos that it causes. Both of the twins have already experienced serious permanent scarring.
The medical bills for IP alone have already reached $35,000 over 2.5 years, and that's just to cover the cost of diagnosis. Both of the twins will have to undergo annual appointments with all of the above exams (MRIs, x-rays, dentist, dermatologist, and neurologist) which will run close to $10,000 annually. This is our out of pocket expense after insurance pays their end.
While both parents work full-time, it's just not enough. Both have student loans, plus the cost of childcare, ongoing medications, and cost of living. Even though mom earns a decent salary in the healthcare business, Dad works for the state government that does not offer competitive pay. Dad has been attempting to find a PT job to help bring in additional income, but has been unsuccessful to this point. They don't live an extravagant lifestyle, and spend their weekends taking the kids to the park and free events in the area. They stay home every weekend and watch movies. Their only extravagant expense is that they take the twins to the beach each year so that they would experience a life that the parents both had growing up.
Any help would be greatly appreciated. All donations made will be put directly towards the medical bill collection agencies. Anything over the requested amount will be put into an HSA (healthcare savings account) for future medical bills. The parents’ once stellar credit has gone downhill to the point where they couldn't even secure a small loan.
Thanks for your time and support. Even if you decide not to donate, please take the time to read about the rare genetic disorder, incontinentia pigmenti, and share the information.
http://ghr.nlm.nih.gov/condition/incontinentia-pigmenti
If anyone would like to see copies of the medical bills, or would like more info, please don't hesitate to reach out to them. The family has never been one to ask for help, and has been doing whatever it takes to stay afloat, but it now seems that things are slowly getting out of hand.
Thanks in advance for your support.
Ashley and Sarah, identical twins, were born 7 weeks early (3 lbs., 14 oz. and 5lbs, 1 oz. respectively) and spent close to a month in the NICU before finally being healthy enough to come home. The medical bills from their birth alone were over $200,000 - of which they were responsible for 20%.
They thought they had jumped through every hurdle, until they found out that Ashley had extreme torticollis and plagiocephaly at 3 months. This required several medical procedures, where she was eventually fitted with a "helmet" that would help to shape her head to a normal figure. It partially worked. However, after a year and a half of occupational therapy, they learned Ashley had half of a vertebrae missing in her cervical spine (neck).
At 1 year, they started noticing that both twins displayed a unique rash which, despite every effort, couldn't be resolved. After what seemed like hundreds of doctor visits, they were referred to a geneticist. Sarah and Ashley were diagnosed with incontinentia pigmenti, which is an extremely rare genetic disorder. (Less than 2,000 cases reported in scientific literature)
The process of getting diagnosed included both twins undergoing MRI's and eye exams under anesthesia, dental visits, dermatology appointments, genetic doctor appointments, X-rays, general practitioner appointments, orthopedic specialist visits, neurology visits, plus many more.
Incontinentia pigmenti (IP) is a genetic disorder that has no cure. It flares up without reason, and there is no known cause or treatment. It can attach itself to the vital organs, kidneys, eyes, brain, teeth, and can eventually lead to incapacitation. They have had several flare ups in the past 2.5 years. It is painful, and can only be treated with skin creams (for skin rashes). It presents in the form of serious blisters all over their bodies, specifically on the arms, and legs. Once the blisters heal, they leave a permanent scar. Pictures are available if you would like to see an idea of the chaos that it causes. Both of the twins have already experienced serious permanent scarring.
The medical bills for IP alone have already reached $35,000 over 2.5 years, and that's just to cover the cost of diagnosis. Both of the twins will have to undergo annual appointments with all of the above exams (MRIs, x-rays, dentist, dermatologist, and neurologist) which will run close to $10,000 annually. This is our out of pocket expense after insurance pays their end.
While both parents work full-time, it's just not enough. Both have student loans, plus the cost of childcare, ongoing medications, and cost of living. Even though mom earns a decent salary in the healthcare business, Dad works for the state government that does not offer competitive pay. Dad has been attempting to find a PT job to help bring in additional income, but has been unsuccessful to this point. They don't live an extravagant lifestyle, and spend their weekends taking the kids to the park and free events in the area. They stay home every weekend and watch movies. Their only extravagant expense is that they take the twins to the beach each year so that they would experience a life that the parents both had growing up.
Any help would be greatly appreciated. All donations made will be put directly towards the medical bill collection agencies. Anything over the requested amount will be put into an HSA (healthcare savings account) for future medical bills. The parents’ once stellar credit has gone downhill to the point where they couldn't even secure a small loan.
Thanks for your time and support. Even if you decide not to donate, please take the time to read about the rare genetic disorder, incontinentia pigmenti, and share the information.
http://ghr.nlm.nih.gov/condition/incontinentia-pigmenti
If anyone would like to see copies of the medical bills, or would like more info, please don't hesitate to reach out to them. The family has never been one to ask for help, and has been doing whatever it takes to stay afloat, but it now seems that things are slowly getting out of hand.
Thanks in advance for your support.
Organiser
Heather Saintsing Hegger
Organiser
Charlotte, NC
