Hi. I’m Darwin’s paternal grandmother, Sally Morris.

 

Darwin Morris is 3 years old and was born with a very rare genetic condition called cranioectodermal dyslplasia. This causes systematic failures of various body systems. Darwin has had breathing issues, and physical and mental developmental issues since his birth. At age 2, he was diagnosed with end stage renal disease and had to go on in-home dialysis. He cannot walk, cannot speak, has to be fed with a GJ tube, and is on supplemental oxygen. He requires round the clock care, but we have struggled to get him access to that since his birth. Last spring, he was approved for 120 hours a week of nursing care through Medicaid/chip; however, due to the nursing shortage many of those hours have gone unfilled.

 

Because of the constant care that Darwin requires, and because of his frequent illnesses and hospitalizations, his parents and grandmother have all struggled to keep working even part time. Although some of his care has been paid by insurance and Medicaid/CHIP, as a family we have racked up more than $45,000 in debt just trying to keep the household running to be sure that housing, transportation, and other bills were met while not being able to keep up with our incomes due to missing so much work.

 

As of the first of this year, Darwin does not have Medicaid coverage and that means we have no nursing care and coverage for many of his medical bills. His medical bills have totaled over half a million dollars in the last four months alone. His father has spent most of his 401(k) and I have spent all of my retirement savings and gone heavily into debt to try to help facilitate his care. His mother also has her own health struggles and has been hospitalized several times this year. Darwin also has a two-year-old sister and a 13-year-old brother. Recently, his sister broke her leg and was unable to go to daycare so that caused parents and grandmother to miss even more work hours.

 

Needs:

 

We need to hire nursing/respite care for some days/nights so that we can get some sleep and go to work. Darwin’s medical needs comprise a full-time 24 hour/day job. At the very least we need supplemental income as we perform these tasks.

 

We need to hire a house cleaning/organization service, as currently we are unable to keep up with basics beyond necessary dishes and laundry. Darwin requires cases and cases of medical supplies that are all over the house and his various treatments record generate lots of refuse and laundry. We need both deep cleaning and organization, and maintenance cleaning.

 

We need to pay off the credit card debt (approx. $45K) incurred to keep the household functioning over the past three years.

 

We need to pay the thousands of dollars of medical bills that were not covered by insurance.

 

We need to pay for mental health/family counseling for the other family members as we deal with this stressful time.

 

We are being forced to consider such drastic measures as giving custody of Darwin up to the state so that he can get the medical treatments he needs. Please help keep Darwin at home with his family.

Update: Withdrawal statement: I will be withdrawing the funds and either paying expenses directly or electronically transferring funds to Darwin’s father. Thank you  for your generous support!