Miss Teen Minnesota 2016
I thank God for every minute I was able to spend with her-- I am forever changed and motivated by her memory. It is because of her that I take on the mission to ensure that every moment of life is celebrated for a child with a shortened life expectancy.
Maryah passed away in a hospice home for adults, while surrounded in a peaceful environment, both the facility and staff were not equipped to handle the special considerations and needs of child-based end-of-life care.
A) Hospital: children most often times do not have the freedom or the ability to leave campus to venture outside, nor is there enough room for families to stay together. (See "Designed to Complete. Not Compete. chart below)
B) Home: parents and siblings alike remain in a home where the memories of the child are often overshadowed with memories of their passing. Parents also must play the role of "caregiver" in addition to "parent"
C) Hospice Home: while this facility is geared toward assisting with and providing end-of-life care, these homes are not equipped to handle the emotional needs of a child. These homes are centered around providing a peaceful environment to whomever is staying within their walls. Like the hospitals, hospice homes do not have the space for the family to spend unlimited time together.
What if There Was Another Option?
In the United States, there are only TWO residential hospices for children: George Mark Children's House in California, and Ryan House in Arizona, with six other homes in the development stages across the country, including my partners Crescent Cove and Ladybug House. Families are able to access pediatric palliative care (care of patients who are not responding to curative treatment. This enhances quality of life for children with life-limiting conditions), respite care all the while in a child-friendly environment. These homes have space for families to stay and enjoy time together through fun activities and peaceful spaces. There is a focus on allowing parents to "just be parents" and most of all, children can simply be children. With over 20 million children in immediate need of palliative care, each one of those children should be able to spend their life living-- no matter how short their life expectancy is.
That is where we come in. Through 'No Matter the Minutes', it is my mission while partnered with my international pediatric hospice coalition, to increase awareness, support, and secure funding to sustain and establish these homes. While the tragedy of losing a child too soon is unbearable, we will be able to uplift more families through their grieving process, all the while helping to ease the financial burden.
Please help me on my journey to uplift countless families across the world cherish sacred time with their children by providing pediatric palliative care, respite and hospice. Together, we can change the world.
Your Miss Minnesota International 2016
|Photo by Paula Preston|
|Photo by Crowning Images|
|Photo by Crowning Images|