Update: the Blevins family chose a portable nanobubble machine from the white water company! Their machine is on its way!!
first $5,000 reached!
Frank, Jessica and their three kids Gage (8), Lilly (4), and Connor (2). Jessica was born with Epidermolytic Ichthyosis and met Frank many years ago. they knew when they were married that if they had kids there was a good chance of them having the same thing because this type of ichthyosis is carried by a dominant gene. although most can see past their differences they still have some moments.
Frank even recalls on more than one occasion the police were called on their family while they were out because the extra skin can be dark brown in color and look like dirt. It can be very hard to look different then others, but for this mom and dad there is an extra struggle because the bathing routine for people with ichthyosis is extensive and the Blevins have four people in the same household. I cannot think of a more deserving family and am excited to have them as my first tub recipient.
Leonie and Grace
update: Lonie and Grace chose a portable nanobubble machine from the white water company. Their machine has been purchased and is on its way!
featured family: Leonie and Grace
I have a special place in my heart for anyone who adopts a child with a disability. I mothers love is something that comes without effort and cannot be taken away, but to feel the same love and compassion for someone you hardly now is something I admire greatly in people.
This brings me to my next family Leonie and beautiful Grace. Grace was born in the Fiji Islands in 2010 and was given little to no chance of survival. abandoned at birth grace spent nearly her whole first year of life in the hospital. Isolated and alone most of the time grace suffered many septic infections which led to some amputations.
"never the less she persisted" Grace as most with ichthyosis is a survivor and eventually was brought to an orphanage in Fiji. Leonie was brought to Fiji to set up and help run a children's home and in her travels she met Grace. Instantly connected as Leonie explains "I am her security, and she is my inspiration" the two were inseparable and finally in 2017 the adoption became official.
Graces care is much like annas and she would benefit greatly from this machine, so help if you can and share if you cannot.
update: we have raised enough money to purchase a Jason microsilk bath for Hanna!
we reached $15,000!
Hanna and her mom Megan are very special to me because they are one of the first people I connected with on my icthyosis journey. Hanna is a beautiful determined eight year old with a kind heart. We first met at an Ichthyosis conference when Anna Wasn't even a year old and Hanna just loved holing Anna. I would love if you could help me buy a microsilk bathtub to make Hannas day to day life alot easier. Thank you!
we have raised $20,000!
Lauren is a 15 year old with harlequin ichthyosis. Lauren was sent home only a couple of days after birth and put on hospice. She was given no chance at survival, but proved everyone wrong. after a pretty bad infection which landed Lauren in the hospital we decided it was time to give Lauren a nano bubble machine.
we reached $25,000!
Matty is a very happy four year old with harlequin ichthyosis. Matty lives with his grandmother Amy and loves all things that a regular boy would love. He has a special interest in elevators and loves to ride in them everywhere that he goes. we were able to send Matty his very own portable nano bubble machine, thanks to all of you!
for this giveaway we teamed up with the foundation for ichthyosis and Polar products to give away $5,000 worth of cooling vests! people with any type of ichthyosis cannot sweat leaving them vulnerable to heat stroke. We were so happy with this giveaway that we will be doing one again very soon. A lot of people are able to enjoy the summer months, that previously were not able to. thanks for all of the donations!
Thanks so much for helping raise enough money to buy Georgia a portable nano bubble machine! we are so grateful for the community we have built for these beautiful children to feel so much love. Gerorgia and her family thank you so much!!!
vest giveaway #2
we were able to give away another $5,000 worth of cooling vests and this give away has reached so many different people. thank you!
We sent a portable nanobubblm machine to Ryker and he couldn't be happier! I am so happy you are helping to give back to such a deserving community.
hunter tub install
this was a huge project that cost over $12,000 and took a few months but we did it and Hun her couldn't be happier!
we bought Lupe a portable machine and she loves it! she says she doesn't have to scrub nearly as much and more skin is able to come off in the bath making day to day so much easier. Thank you!!
we granted Macron $5,000 and raised another $8,000 for his future needs!
Cheesecake, figs, and pinot noir.