Liz McCusker became Tu Nidito’s Executive Director in April of 1997. Over her time with the organization she has seen us rise and fall with triumphs and struggles. Tu Nidito remains stronger than ever under her leadership with a dedicated board and knowledgeable staff.
“Looking back over my almost 18 years as Executive Director of Tu Nidito, I am struck by the massive changes in the organization. I was hired in 1997 when Tu Nidito had been in operation for only seven months. A team of community members, physicians and most importantly parents saw a void in the community and a need for services to serious ill pediatric patients once they left the hospital and set the vision for Tu Nidito. This vision was actually born in 1985 and in 1992 this team of visionaries made a pitch to a local hospital to begin a program for terminally ill children, but sadly it was to no avail. However, because there was such a need, this committee kept moving forward.
In 1994, everything was put into place for Tu Nidito. The team raised money to start our programs, filed our 501(c)3 so that Tu Nidito was incorporated by the IRS, received its licensure to function as a pediatric hospice, developed a board of directors and created a name, ‘Tu Nidito.’ Then on October 25, 1996, Tu Nidito had its first pediatric hospice client. She was a one year old and had Trisomy 18 – a rare genetic disorder.
In order to sign up for hospice services, families and doctors had to fill out paperwork certifying that they agreed or understood that such client had a life expectancy of one year or less and pain/symptom management, not curative treatments were the focus. Families were turned off by a suggestion that they had to stop curative treatments and conclude that their child would die. Doctor comments and concerns were similar. But we knew that these families needed the emotional, social and educational support to help them navigate the journey of a serious medical condition. So, in 1998, our program was offered with no limits on prognosis and no medical treatment criteria.
The success of this new service and the rare need for a medical pediatric hospice service resulted in Tu Nidito dropping its hospice program in 2000 and the explosion began. Today, through our serious medical conditions programs we serve on average 200 children and 170 adults from 100 families per year.
One of the very best things about Tu Nidito is that we continue to listen to families and our community. We identify unmet needs and take action. We ask a number of questions: does this fit in our mission; is anyone else doing this; do we have the resources to take it on; how can we make this happen for our community because it is that important.
Since our expansion in 1998, we’ve proactively merged many organizations into our services such as Candlelighters, Children to Children, Magwitch Treehouse Camp and Ben’s Bells. Some of these programs have grown to stand on their own, some have grown to be core programs of our services, but with each merger the purpose is to ensure that support is available for families from diagnosis through and after a death of a special person.
Last year, agency wide, we served 840 children and 549 adults. We had 369 referral sources and 385 volunteers. We operate twelve different non duplicated services including satellite bereavement support groups in three surrounding Tucson locations and in three Boys and Girls Clubs locations.
Today, Tu Nidito looks much different than it did in 1996, but our purpose has not changed much at all, only expanded. My promise to the agency and the community remains the same as it did back in 1997 – to lead Tu Nidito so that no child grieves alone.”