This is Adeola (Addy). She is 17 months old. She, and her identical twin sister Omolola (Lola) were born with a very rare skin condition, Olmsted Syndrome. There have only been 77 reported cases of Olmsted Syndrome in the world since 1926, and, as far as we can tell, only one previously was female. This condition causes their skin to grow more rapidly than the average person. Addy & Lola have to be bathed more frequently than most babies, and they have to be scrubbed vigorously to exfoliate the dead skin cells. Even with the scrubbing, they still develope painful callouses. This affects their heads, including their faces, hands, feet, knees and diaper areas. The girls are currently on a medication that is a chemotherapy. So far their insurance has been covering their medication, which can cost several thousands of dollars monthly. A new treatment has recently been discovered that can help with skin conditions like theirs. It is called nanobubble therapy, and has been shown to make an amazing difference. In order to receive the treatment, their parents, Femi and Noelle, need to purchase a portable nanobubbler from white Water Company. The machine, with shipping, will cost about $5000, and won’t be covered by their insurance.
Noelle had to quit her job when the girls were born. They have to have many medications and have topical creams and ointments applied frequently. They also have physical therapy and many doctor appointments. They would have to hire a nurse to care for Addy & Lola, so Noelle has become a stay at home mom. Femi and Noelle get by okay, but there is not much extra money to buy things like the nanobubbler.
If you can help, every little bit would be greatly appreciated! If you can’t help financially, please keep these angels in your prayers.
If you are interested in learning more about their journey, Noelle writes a blog:
- Susan Mulhern
- Sabrina Lee
- Karen Schutz
- LuAnn Langowski
Organizer and beneficiary
Julie Underwood Schmelling