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Amelia's Ichthyosis Fight Fund

$4,059 of $7,000 goal

Raised by 80 people in 19 months
Amelia was born 4 weeks early on 7-18-17 with an unexpected diagnosis of Ichthyosis. Which is a genetic mutation causing her to be born with a thick top layer of skin that is painfully cracking and peeling. Under that layer is more red and sensitive skin that in time may also shed and repeat the cycle. She is at high risk for skin and blood infections. When she was born she could not shut her eyes for 2 weeks because of how tight her skin was on her face. And her skin is so sensative we have had to change all the bath and laundry soaps and buy distilled water for her nightly baths. I still don't know very much about her specific condition as we are still awaiting genetic testing. Unfortunately the money I had saved for use while on maternity leave went to medical expenses and bills. I go back to work at the end of the month, but Amelia has appointments at the U of M children's hospital and we need gas money to get to those appointments until I get my next paycheck in late September. I hate asking for money but she has developed a staph infection already and really needs to have these fallow up appointments with her pediatric dermatologist. Unfortunately no dermatologist in duluth will take her case because they do not have any experience with ichthyosis due to how rare it is.
Please consider donating to her fund and keep her in your thoughts as she heals from her current infection.

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We have reached out ultimate goal since amelia was diagnosed, we will be receiving a nanobubbler machine withing the next 2 months! After loosing our 6 month fight with insurance, and trying all other routes possible, we are finally getting the $4,500.00 machine to help make Amelia's skin more normal.
We can cut down on aquaphor during the day, cut out bleach in the baths, and won't have to worry about pain when exfoliating.
It's been a long year and a half and we wanted to thank everyone who has helped by sharing her GoFundMe, donating to her skin care, giving us clothes (hers get ruined by the aquaphor), giving words of encouragement, and for all the prayers.
We will post pictures when the machine arrives!
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Amelia made it through summer and has started WALKING! Yay!
Unfortunately she is waking up so itchy at night still. hoping once it cools off more she wont need benadryl to calm the itching.
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So I have been asked how big amelia's skin flakes get, and decided to post a photo of a large one. The large ones usually are only on her scalp the rest are much smaller. For the large thicker ones on her scalp we let us soak in oils and aquaphor for a few hours before exfoliation. To get them off we like to use fine tooth combs. The skin flakes look smooth on the top and like bumpy little bristles on a bottom, this is where the skin pulled up from the pores.
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We have a quote for a nanobubbler machine and are hoping to get the funds together to buy one for Amelia so we can eliminate the use of bleach and not have to exfoliate and peel the skin flakes off her. She is so itchy, dry, scaly, and uncomfortable in her own skin. At this point she cant manage to sleep through the night without benadryl to keep her from scratching so much that she bleeds.
The machine is quite expensive and we are putting money away and hoping with the help of her go find me we can get to out goal faster. Thank you to everyone that has or will share or donate!
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$4,059 of $7,000 goal

Raised by 80 people in 19 months
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$10
Anonymous
1 month ago
$5
Anonymous
5 months ago
$7
Anonymous
7 months ago
SL
$5
SERAFIN MACARRO LEON
7 months ago
MS
$200
MANUEL PEREZ SUAREZ
7 months ago
JM
$50
John Murphy
7 months ago
FM
$50
Fabian Martinez
7 months ago
$10
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7 months ago
$50
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7 months ago
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