EKF is Working. . . .

Since its inception, the Erika Kate Foundation has been networking and laying groundwork for the future. Things are starting to come together, and we are excited to see this development taking shape. We have been channeling our energies into getting the word out about EKF as freely and frequently as we can. Through some of our faithful followers, there are hundreds of personal and professional emails going out all over the country, which include a link to the EKF website. Also, there have been countless opportunities we’ve had with others to share about EKF through various kinds of correspondences. It has been encouraging to see how our mission has struck a cord with others who have decided to share their time and talents with us to benefit our cause. We are building our volunteer base and are looking forward to the opportunity to work with these gifted and generous professionals. In addition to raising awareness about the EKF, we have been educating ourselves on nonprofit leadership essentials, which continue to groom us for the tasks ahead. As we see our vision becoming more clearly defined, we see great opportunity and potential for the EKF to make a significant impact on families emotionally, spiritually and financially through their time of need.

 Emotional Support

Emotional support represents a significant portion of what we have to offer at this phase of our development. We have been able to offer a variety of literature to encourage and educate those who are in the midst of their battles or who have fought the battle and are now somewhere along their journey of grief. Obviously, we don’t have all the answers, and we can’t offer anything that will take away their pain; but we’ve been in a similar situation ourselves. We know that hearing encouragement from other families that have ‘been there’ is meaningful to those still in crisis mode. When people in a crisis know that others are rallying around them, it has a way of effectively loaning them strength, giving them courage to persevere another day. Some may say, “it’s just words”; we don’t underestimate the power of the message behind ‘the words’.

 Financial Support

At the heart of the EKF work is financially supporting families who have a child with a life threatening heart or lung condition. This is the one area where we can best help families in need. We have initiated a process for identifying and assisting families in need. This system has worked well thus far; however, we continue to look for ways to improve our efficiency and effectiveness. For starters, we’ve decided to focus much of our effort at the hospitals where Erika received treatment. We’ve established relationships with social workers at the University of Iowa Children’s Hospital, St. Louis Children’s Hospital, and Children’s Hospital of New York (CHONY). It is through the work of caring medical social workers that we have been able to connect with families who are in the midst of their storm. The social workers introduce us to families who may be able to benefit from our financial support during their child’s hospitalization or prolonged illness. The family sends us a completed application and a brief letter detailing their current situation. The foundation responds to their request within 72 hours. All of this is typically coordinated through the social worker. We have raised nearly $30,000 to date and plans are underway to embark on our first coordinated fundraising campaign. As of October 1,  2007, we have been able to provide assistance to 8 families, and other applications are coming in.

 Families Helped

In March, the EKF helped a family from central Iowa. They were forced to travel to a larger children’s hospital in Milwaukee to seek more definitive care for their 2-year-old son who suffers with a life threatening congenital heart defect. Outpatient lodging options at the children’s hospital in Milwaukee were limited. The EKF helped negotiate a lower nightly rate at a nearby hotel and paid the expense for a four night stay. Their little boy was able to get the care he needed. This effort was coordinated by social workers at the Children’s Hospital of Iowa and Children’s Hospital of Wisconsin. The family had no resources available to pay this expense and no program was in place to otherwise meet their need.

In April, the father of a one and a half year old boy, hospitalized more than four months with a complex cardiac condition, approached his son’s cardiac social worker about a utility bill he could not pay and feared would be disconnected. This overwhelmed father had taken much time off from work to be with his son who was unstable for most of the hospitalization. The EKF paid the bill, and the father was very relieved and thankful for the assistance.

In June, a young family was finally able to bring their 6 month old son home from the hospital. He had been born with a severe heart defect and required multiple surgeries to repair his ailing heart. After a very stressful start, this baby boy was able to go home on several prescription medications not covered or only marginally covered by the family’s insurance plan. The family was overwhelmed by the financial challenges brought by the baby’s heart condition, and the EKF has been able to help cover some of the pharmacy costs in the early going, as the family transitioned back home.

In July, we began helping another Iowa family with lodging and meal expenses as they spent the summer in Iowa City getting necessary care for their young son with a complex congenital heart defect.   The child's hospitalization is ongoing some 4 months now after admission.  The family finances have been severely strained by the lengthy hospital stay, and EKF has been instrumental in helping the family make ends meet during this trying and difficult time.

Also in July, we were asked to provide financial assistance for a family in New York.  Their 8 year old son had been hospitalized for 6 weeks at Morgan Stanley Children's Hospital of New York- Presbyterian, waiting for a heart transplant.  The family didn't have the financial resources they required to keep up with dislocation expenses at the hospital and the bills at home.  EKF was able to help this family financially as they were in the thick of it all.  The young boy received his transplant and was discharged from the hospital within a couple of weeks.  He continues to do well today.  His is a remarkable story, and we hope to tell the story in greater detail in the near future. 

In August, a young Iowa family welcomed their new son into the world.  They had no idea their little one would be born with a severe congenital heart defect.  The baby was listed for a heart transplant before he was one week old, and miraculously received the transplant at just 16 days of age.  The family was understandably overwhelmed by the circumstances of the situation.  EKF was asked to help the family cope with the demands of their unforeseen circumstances which required both parents to be away from work for the duration of the hospitalization, some 6 weeks.  The Foundation responded by making a single mortgage payment to their mortgage lender, on behalf of the family.  The baby did extremely well post-transplant and was discharged in relatively short order.  We're told the baby continues to do well, today.   The family was very grateful and credits this gesture by EKF as having enabled them to keep their heads above water, financially, during their crisis.

 In October, the Foundation was asked to help a family from New York.  Their 12 year old son has suffered from severe pulmonary hypertension for the last 7 years.  The boy is on IV prostacyclin, a potent intravenous medication delivered into his bloodstream 24 hours a day, 7 days a week.  Since his diagnosis, he’s been hospitalized numerous times with infections and complications, and has now developed severe right-sided heart failure secondary to his pulmonary hypertension.  He’s currently awaiting a lung transplant.  EKF was approached to help with some dislocation expenses related to his recent hospitalization.  This young man and his widowed mother have been through so much. EKF was happy to give them a break, and help them out financially during this past month.

In October, EKF helped another family who had traveled a great distance to seek treatment for both of their twin 3 year old sons.  Both boys had been diagnosed with severe cardiomyopathy.  One of the boys had heart transplant a couple of months ago.  The family remains in NY for follow up care, and won’t be returning home for several months yet.  A few years back, the family had lost their first child suddenly, at age 2, to a previously undiagnosed heart condition.  EKF provided assistance with some of their current housing and living expenses as they continue to wait for medical clearance to return home.

In November, EKF helped a single mom in Arizona whose 5 year old daughter required open heart surgery to repair a complex congenital heart defect.  The child was hospitalized for only one week, but required constant observation and care for the first 4 weeks post-discharge.  During this time, the child's mother was not able to work to support the family and had no reserves to tap to get them through the post-operative period.  EKF helped out by making a single rent payment which enabled this single mother of two to keep up with demands at home while her child recuperated after surgery. 

It has been our privilege to extend assistance to these families in the midst of their medical challenges.  We’re happy to do this through the Erika Kate Foundation, and we are grateful to our donors for making this assistance possible.  We hope to help many more families in the midst of a medical crisis with their child, and we will continue to do so as funding allows.  

Please note:  the extent to which EKF is able to help these special families is dependent upon the financial support of our donors.  We need you.  We invite you to help us help other families in their time of need.  Please make a donation to our cause, today. 

 The Future

As we look to the future of the EKF, we are becoming more aware of our niche in the nonprofit world. We recognize the need for our foundation, and realize that the EKF is making a difference in the lives of other families. Our purpose of the EKF is being fulfilled as we connect with families who are traveling a path similar to ours. Through our work, we feel a strong connection with Erika as we extend her legacy and touch more lives by sharing her story and her purpose in this life. In the days ahead, we look forward to meeting more exceptional families through our foundation and helping them navigate through their time of crisis. We are working to develop additional programs and strategies to help families in need. We are in the process of developing a grief support forum for families that have experienced the loss of a child. This will be a safe, encouraging, and informative place where families can ask questions, communicate their feelings, and offer comfort to others who are in the midst of their journey of grief. We are currently testing possible formats and making careful consideration for how we can best incorporate this into the EKF emotional support repertoire. We are passionate about the future of the Erika Kate Foundation. We will continue to update the website as developments are made.