Michelle and I, and the Michelle Kuri Foundation

Over the course of her life there were many times Michelle endured pain and suffering, times when she came close to death because doctors and nurses could not “read” the signs she presented. No one should have to suffer as Michelle did. Children and adults who cannot speak for themselves, who cannot tell a doctor or nurse what hurts, how much it hurts, and where it hurts, deserve to be treated with dignity and quality care. They deserve an advocate who can speak for them. They deserve an advocate who can educate the medical community how to interpret the signals these sufferers send. The Michelle Kuri Foundation promises to be a voice for the voiceless, to educate professionals and caregivers how to care for those who have no words with which to express themselves. I know about this need because of my life with Michelle. I cradled Michelle in my arms. After all the months of wondering why my baby never cried or smiled, I finally had an answer. The doctor told me: “Your daughter has severe cerebral palsy. She will always be like an infant, a rag doll.” I held my baby closely and told her, “You will be my 'forever baby’. I will never leave you, Michelle.”

I accepted the reality that Michelle would never achieve the milestones proud parents capture in photos and videos. There would be no first words, no first steps, no first “I love you, Mommy.”

Michelle was blessed because despite the severity of her cerebral palsy because she never experienced any of the seizures, illnesses, or infections that are the hallmarks of cerebral palsy. Since she never experienced any of that, she also never had to endure any medication side effects that are common with medications prescribed to control seizures, illnesses, or infections. Although she could not talk and could not walk, Michelle became a vibrant spirit, a delightful young woman. Always upbeat, some described her as the life of the party.

Michelle never weighed more than 75 pounds, yet she was very healthy and strong. When she was 29 years old, her body began to deteriorate because of spasticity and aspiration of food. Problems with her lungs, stomach, and intestinal tract plagued her for the rest of her life. By age 36, Michelle’s easy going manner changed. She began crying out, stiffening up, and breaking into sweat whenever she was lifted and carried. I understood that Michelle was in agonizing pain, but how could I convince the doctor that Michelle needed care that I could not give her?

We saw many doctors many times only to be dismissed by doctors who labeled my concerns as trying to “micromanage their decisions.” Finally, an MRI revealed that the Herrington Rod used to straighten Michelle’s twisted spine had dislodged; it was piercing her hip bone! Without revealing the extent of damage to Michelle’s frail hip bone, the doctor told me what no mother can ever bear to hear: “There is nothing more that can be done.”

I moved heaven and earth to find another doctor to help manage Michelle’s pain. Increasingly heavy doses of pain medications offered no relief, only unacceptable side effects. Again I heard the words: “Nothing more can be done.”