Jemma’s Journey

On November 14, 2016 Jemma June Singer entered this world.
Less than 24 hours later Jemma was having her first major surgery to repair the opening in her spinal column due to Spina Bifida Myelomeningocele.

5 days later was her second major surgery.  Due to ventriculomegaly (hydrocephalus-excess fluid in the brain) she had to have an VP shunt placed. 

Jemma was such a Fighter and recovered so well we only spent 7 days in the NICU. 

During those 7 days hydronephrosis (fluid on the kidneys), Arnold Chiari Malformation Type 2, neurogenic bowel & bladder were diagnosed. Due to the neurogenic bladder and hydronephrosis Jemma is catheterized every 2 hours around the clock since birth. 

3 months later, on February 20, 2017, Jemma became lethargic. We rushed to the hospital and were then rushed to Akron. Jemma was in shunt failure. Another major neurosurgery for her.


Then history repeated itself once again 8 months later on October 4, 2017. 


And again 2 months later on December 15, 2017  
And once again 9 months later on Sept 17, 2018.

Jemma’s brain was in a state of injury for over a year. It hurt her whole body physically. 

She  has started physical therapy, occupational therapy and speech therapy to help her meet milestones. 

Jemma had a surgery in July of 2018 to repair her eye muscles in hopes of correcting her vision and avoiding blindness. As of now this has been successful! 


Jemmas takes medications daily and wears AFO’s. She also wears a brace at night for her hip dysplasia. She just got a new brace to help her to learn to bear weight and hopefully she will learn to stand and one day WALK! 

Along this journey we have lost insurance coverage. I had to quit my job to stay home to give Jemma the care she needs and deserves. 

We have had testing done due to Jemma’s developmental delays that revealed Jemma is missing nearly all her cerebellum, her corpus collosum, she has heterotopia and cerebral palsy. Her brain abnormalities are very significant for her diagnosis that will require further genetic testing.

We lost half half our income and have tried to survive on just my husbands for a family of 5. 

The loss of insurance came at the worst time as she required emergency neurosurgery for shunt malfunction. We were over income by about $400 for assistance that month. 

One bill of the 13 from ACH is a little over $32,000. 

We have been in shut off notice for our utilities multiple times. We quit paying everything but the necessities. 

And sadly once again Jemma might be losing insurance. This is why I am fighting in Ohio for disabled children to get health insurance FREE regardless of the families income. 

No family ever wants to ask for help. We never ever imagined this is where we would be in life. We imagined life much different but God has other plans. 

We are blessed with 3 beautiful children
We will continue to be thankful.