Age: 25 years old
Parents: Gary and Lynn Miyata

As the eldest of our three children, Kehaulani (Lani) has been so tolerant of our family throughout her 25 years. In fact, she was most tolerant of all those physicians and specialists who prodded and poked her and were clueless about Rett Syndrome. She was not diagnosed with Rett until she was 12, which meant that for 12 long years, we, as parents, were beating ourselves up for her losing skills, and getting frustrated with her inconsolable periods of crying (what we later learned were periods of "brain drain"). Having her as our first child, we could not figure out what we were doing wrong. In all fairness, we must admit that Lani is atypical – not a "classic" Rett girl. She was born with a visual impairment and some brain atrophy and fluid, which did not require a shunt but did make her head appear larger than normal. (Oddly enough, we learned years later that the microcephalic characteristic of Rett balanced out her head size so she is now proportionately normal.) If only we knew then what we know now – a perfect testimonial for Rett Syndrome Awareness!

Lani outlived all the "professional" death predictions. Thankfully, we learned of a "new" program called Mobility Opportunities Via Education (M.O.V.E.) when Lani was just six and a half years old, that taught children/adults to sit, stand, and walk. Lani was just skin and bones and constantly on antibiotics at the time; we moved our family to Bakersfield to enroll Lani in this public program. It was the best thing we ever did for her! She learned to walk by the age of 10, put some muscles on those bones, and improved her health immensely! Till this day, we credit her longevity and health to the mobility gained thanks to the program and staff. Lani, our pioneer, next conquered inclusion before it was commonplace and attended her neighborhood school in Tehachapi with her sister. She continued to attend classes with her peers even when we moved back to Simi Valley, blessed with good staff and aides throughout her school years. After graduating high school, she has become the first severely handicapped entrepreneur in Simi Valley, striving to be a productive member of society. Doing business as Kehaulani's Treasure Chests, Lani plans to sell things that are of interest to her. Being nonverbal with basically no self-care skills, Lani relies on her strong support network to assist her with everything, and hopes to someday even make enough to pay them. She currently sells drinks in vending machines and has plans to sell other items later. Be on the lookout for her website when it gets created someday. Lani and her family wish to thank everyone who donates to this IRSF fundraiser for your kind support. We hope you will continue to spread awareness about Rett Syndrome and pray that researchers will someday find a cure.

Donate Now in Kehaulani's Name

Kehaulani's Coffee Cup!












Donations to Date: $2,300