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Monday, October 3, 2011

Change of Routine for Jonah & me.


This is Kiesha (in red) with family at her "make a wish" Kiesha got to meet her hero Jackie Chan. Kiesha passed away last Thursday. She was 15.

I remember the day her mom called me like it was yesterday..... Kiesha had two rare disease's her secondary disease is called D2-HGA. Even less is known about this disease- then Sanfilippo. Her body can't get rid of an acid, it builds up then comes out in the bodily fluids. D2-HGA is easier to diagnose then Sanfilippo based on the childs unusual urine. Kiesha's Mom is a nurse, she never believed that D2-HGA was what was killing her daughter. She pressed for more testing. The testing came back with MPSIIIC (just a few months after Jonah's DX.) JJB's website had been up for just a few weeks, when Kiesha's family found us. Before even calling me, Kiesha's mom saw the information about doctor Maria Escolar, she immediately called Maria and set up an appointment. A few days later Kiesha's Mom got a call from her best friend telling her to: "Turn on Good Morning America, Jonah and his mom are on T.V."