read about my mission and consider donating just $2 a month and making a huge difference in the lives of many.
my goal is to get enough monthly subscriptions to be able to buy a microsilk bathtub or nanobubble machine each month for a family that has multiple members with ichthyosis or a single member with a severe form of icthyosis. This bathtub is one of the only things that can help the management of severe skin disorders and is not covered by insurance. Each bath or portable machine is about $5000 once we reach that target we buy the bath and then choose a new family.
0nce we reach our goal of five thousand a month through small monthly donations we will branch out and start a program to help people adopt children with ichthyosis that have been abandoned. We will also start sending lotions to kids around the world affected with ichthyosis.
meet Matthew, (written by Matthews grandmother)
Matthew is my darling boy and the light of my life. He is almost 6 years old and is pretty typical in many ways. In fact he’s a lot like Curious George, but he can also read, is an enthusiastic elevator fan, and is pink! When my daughter was pregnant we had no idea her baby would be born with harlequin ichthyosis. It was so severe he nearly did not survive and was in the Cincinnati Children’s NICU for 2 1/2 months. He continues to need their care from many departments: dermatology, ENT, audiology, ophthalmology, developmental behavior, and physical, occupational, and speech/language therapies.He has also been seen by their specialists in orthopedics, dental, infectious disease and neurology.
Matty’s skin care is first priority. Several hours everyday are spent soaking, exfoliating, and repeatedly Aquaphoring his wiggly not-so-little body. Thank goodness he loves the water! I replaced my old tub with a deeper soaker tub so he could slosh around without flooding the bathroom, but it is difficult for both of us to loosen and physically rub all that excess skin off day after day. The oxygen bubbles would do a better job and make life more pleasant. His skin would be healthier. He would be more comfortable (before, during and after). The microbubbles would definitely help with the thick dry skin on his hands and feet that cracks painfully and is so difficult to soften. And there is a benefit I just thought of - Matty would look better and hopefully get fewer stares and more smiles from other kids. It is heartbreaking. He is just starting to figure it out.
Matty loves to go exploring, looking for new and exciting elevators to ride. He studies up on all the makes and models, and he gives a running commentary as he greets and ushers people to their floors! It’s great for his speech and socialization. We are retrofitting a closet to make him a play elevator. We spend a lot of time at the Y where he swims, tumbles, and plays sports. He’ll be on an indoor soccer team soon. Matthew loves to build things, operate anything mechanical, paint rainbows, watch PBS, and bake cakes. He loves every kind of fruit, Chinese food, and french fries with lots of ketchup best. Matty is so happy and exuberant that he bounces through life. The millions and billions of bubbles will keep him that way.
Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The only managment for icthyosis right now is long bathes and constant use of aquaphor or other lotions.