The Need for a children’s hospice and respite care home is best understood from a mother waiting for this home for her family and thousands of others in our community:
Did You Know:
- Thousands of children and young adults in Minnesota have a life-threatening condition.
- Over 700 children die each year in Minnesota, nearly half of those children could potentially benefit from a children’s hospice home.
- In metro areas around the United States, there are over 4,700 hospice homes for adults, but only a handful that are being built and designed just for children and their unique needs.
- Only TWO dedicated respite and hospice homes for children exist in the entire United States; one in California and one in Arizona (see graphic below). Yet there are currently over 45 children’s hospice homes offering palliative care in the United Kingdom, several in Canada, two in Australia and many others around the world.
- Most children living with life-threatening conditions who need palliative care have difficulty accessing support, which can result in unnecessary pain and suffering and excruciating strains on families and communities.
A child’s diagnosis of a life-threatening condition is devastating. The life imagined, a long, bright future, stresses of extra-curricular activities turn into an emotional roller coaster of gut wrenching decisions relating to the quality of life, care and wellness of the child.
Traumatic episodes including trips to the hospital as well as countless stressors on the child, siblings and entire family and support system ensue. The 24-hour care cycle becomes unrelenting. All-consuming medical needs become the focus of a life never imagined or dreamt, but is now the reality. Balancing priorities often takes a toll on family relationships, marriages, jobs and other obligations. Adjustments and compromises are made, but are wrapped around decisions that often cause heartache and emotional strain.
The Toll on Families
Twenty-five years ago a child with a life-threatening condition may not have been taken home from the hospital following such a diagnosis. The options for care and treatment were not the same. Today, we have advanced medical care for children with life-threatening conditions, and the final care decisions are often left up to the family, along with the extraordinary costs. This responsibility can be devastating for many families. Families who otherwise may have had two incomes may face the decision to quit a job to be home to provide the 24-hour care that is necessary.
A significantly decreased family income holds many challenges that effect the ability to pay for essential care, to help care for other children, pay for assistance needed to balance the typical demands of having a family, such as, cooking, cleaning, and extracurricular activities, and the opportunity to spend quality time as a family or to take an emotional break. There are hundreds of families in our community that could use our support and commitment of being a beacon of hope, light and peace in the midst of adversity and the realization that their dreams for their child’s future, will remain just that.
With your help, Crescent Cove will offer care and support to children and young adults who have a shortened life expectancy, and their families by offering a unique suite of programs and services designed specifically and exclusively for them, at no cost. Together we can lift up these families and their children during their most precious hours.