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Founder’s Letter, 2015

It has been nearly ten years since Nickie and I founded the Luca John Foundation. It has been an absolute privilege to serve the hundreds of families throughout the country, who have come to us for financial and emotional support during their time of grief. It has also been exciting to start fundraising for our first medical grant. Our 2015 goal is to offer our first medical research grant for the study and cure of the rare bone disorder known as Skeletal Dysplasia.

Entering our tenth year has given us time to reflect back with gratitude and look ahead with renewed hope. Nickie and I know what it’s like to lose a precious child, and it does our hearts good to be able to support others who experience this particular kind of loss. It also inspires us to see the families we help reaching out to support other families. In this way, the foundation has truly taken on a life of its own. Together with our donors, sponsors, volunteers, and participating families, we have generated a national network of support for grieving families. Losing our son was a loss that cannot be put in words, but his life and legacy now lays within this foundation. In a way he grows, as this foundation grows. His name is echoed in places we would have never imagined. What can we say but thank you.

Looking ahead, we have set these milestone goals for the Luca John Foundation:

 

Continuing to be the Leader in Providing Grants to Families for Infant Burial Costs

As we enter our 10th year we continue to be one of the only national Non-Profits that help families with funeral expenses for their infant children. We are looking at helping over 200 families annually. Today we receive an average of 5-10 requests per week, and we only see that number growing. Continuing with our method of structured growth we want to continue to provide quality care for each family that comes to us.

Seeking Fairness in Honoring Our Children

We believe funeral expenses need to be more consistent across the nation, and one of our goals is to have a national guideline for this. Families come to us with typical expenses ranging from $1,500 to $3,000 for burial costs, but these can push upward to $10,000. While we understand the need for any business to make money, we also need to recognize the limitations many families have and the lack of insurance for babies in utero.

Gene Mapping for Skeletal Dysplasia

There is surprisingly little research done on the gene code for Skeletal Dysplasia. This bone disorder affects one in every 4,000-5,000 births. Our 2015 goal is to make a significant grant for gene mapping this rare disease. The application process will be rigorous, with an eye toward institutions that have already done significant research into other aspects of this disease. As we delve into this portion of our mission we are targeting Physicians and researchers to join our Medical Grants Advisory Board, who will be instrumental in identifying what projects hold the greatest value.

We started this foundation after our community showered us with love and generosity at a heart-breaking time in our lives. We wanted to do the same for others, while honoring the memory of our baby, Luca John. We know that the power of love heals, and it’s heart-warming for us to reflect on how many people have supported this cause since its beginning. We set out to heal hearts and provide hope. We didn’t know how much it would give us in return.

Nickie and Kevin Baranowski

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