Family Spotlights

Update: the Blevins family chose a portable nanobubble machine from the white water company! Their machine is on its way!!
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.

May 2019:

The Blevins

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.

august 2019:

Leonie and Grace

september 2019

 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!